517053

article2014
AUT0010.1177/1362361313517053Autismvan Heijst and Geurts

Original Article
Autism

Quality of life in autism across the 2015, Vol. 19(2) 158­–167

© The Author(s) 2014
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DOI: 10.1177/1362361313517053
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Barbara FC van Heijst1 and Hilde M Geurts1,2,3

Abstract
Autism is a lifelong neurodevelopmental disorder, with a known impact on quality of life. Yet the developmental trajectory
of quality of life is not well understood. First, the effect of age on quality of life was studied with a meta-analysis. Our
meta-analysis included 10 studies (published between 2004 and 2012) with a combined sample size of 486 people with
autism and 17,776 controls. Second, as there were no studies on quality of life of the elderly with autism, we conducted
an empirical study on quality of life of the elderly (age range 53–83) with autism (N = 24) and without autism (N = 24).
The meta-analysis showed that quality of life is lower for people with autism compared to people without autism, and
that the mean effect is large (Cohen’s d = −0.96). Age did not have an effect on quality of life. The study concerning the
elderly with autism showed that the difference in quality of life is similar in the elderly. Age, IQ and symptom severity did
not predict quality of life in this sample. Across the lifespan, people with autism experience a much lower quality of life
compared to people without autism. Hence, the quality of life seemed to be independent of someone’s age.

Keywords
age, autism, meta-analysis, quality of life, review

Introduction
Autism1 is a lifelong neurodevelopmental disorder, yet the not employment satisfaction). Quality of life (QoL) is a
developmental trajectory of people with autism is not well more comprehensive, multidimensional concept that
understood. A minority of adults with autism, although includes subjective well-being, and is well suited to assess
continuing to be affected by their autism, can find work, people with autism (Burgess and Gutstein, 2007). The
live independently and develop meaningful relationships World Health Organization (WHO, 1995) defines QoL as
with others. However, the majority have an overall poor the individual’s perception of his or her position in life in
outcome (Billstedt et al., 2005). They remain dependent the context of the culture and value system, and in relation
on their parents or others, are either unemployed or under- to one’s goals, expectations, standards and concerns. It
employed and lead fairly isolated lives (Howlin et al., incorporates the individual’s physical health, psychological
2004, 2013). Moreover, a large number of adults with state, level of independence, social relationships, personal
autism remain without appropriate services and effective beliefs and his or her relationship to salient features of the
interventions (Barnard et al., 2001; Gerhardt and Lainer, environment in a complex way. Therefore, the first goal of
2011). Consequently, many parents of children with autism this study is to investigate the QoL of people with autism.
do not know what to expect for the future of their children.
They worry about what will happen to their children when
they are not around to care for them anymore, and they 1d’Arc,Brain & Cognition, Department of Psychology, University of
fear that the adult services are not as good as those for Amsterdam, The Netherlands
2Dr Leo Kannerhuis, The Netherlands
children (Eaves and Ho, 2008). These factors combined 3Cognitive Science Center Amsterdam, University of Amsterdam, The
highlight a growing need to describe the developmental Netherlands
trajectory of people with autism, so that the appropriate
Corresponding author:
steps in provision of care can be taken.
Hilde M Geurts, d’Arc, Brain & Cognition, Department of Psychology,
The majority of research on outcomes in autism has University of Amsterdam, Weesperplein 4, 1018 XA Amsterdam, The
focused on one or a few domains (e.g. work, friendships) or Netherlands.
only on objective measures (e.g. employment status, but Email: [email protected]
van Heijst and Geurts 159

Previous research on unidimensional outcome meas- than in childhood. There may even be an accumulative
ures suggests that one of the predictors contributing to bet- impact of autism impairments on finances, health and
ter adult outcomes are less severe autism symptoms (Eaves social life, as was found for attention deficit hyperactivity
and Ho, 2008; Kuhlthau et al., 2010). Autism symptoms disorder (ADHD) impairments (Bernardi et al., 2012; Brod
seem to show modest improvement with age (Esbensen et al., 2012). For these reasons, we will explore the direc-
et al., 2009; Happé and Charlton, 2012). Age also has an tion of the hypothesized age effect.
effect on other aspects of autism, as older people have
shown fewer sensory abnormalities (Kern et al., 2006) and
Methods study 1: quantitative review
less maladaptive behaviour (Shattuck et al., 2007) than
younger people with autism. However, not all individuals Literature search
improve. Some people reach a plateau in their develop-
ment, and others decline (McGovern and Sigman, 2005). The databases PubMed, PsycINFO and Web of Knowledge
In addition, while some symptoms show modest improve- were searched for studies (including theses and disserta-
ments, this seldom leads to functioning in the normal tions) that focus on QoL in autism (up to January 2013).
range, which reinforces the notion that autism is a lifelong Search terms relating to autism (e.g. autism, autism spec-
condition (Seltzer et al., 2004). Therefore, the second goal trum disorder (ASD), Asperger, pervasive developmental
of this study is to assess the effect of age on QoL. disorder–not otherwise specified (PDD-NOS) were com-
To our knowledge, there is currently no quantitative bined with QoL and measures of QoL (e.g. quality of life,
review of QoL in autism, but there are two qualitative health-related QoL (HRQOL), World Health Organization
reviews of QoL in autism by the same authors: Kamp-Becker Quality of Life-Brief (WHOQOL), PedsQL). We did not
et al. (2010) – 7 studies, and Kamp-Becker et al. (2011) – 9 search unpublished work by authors, but cross-references
studies, of which 5 studies overlap with those of the 2010 of the obtained studies were checked for studies that might
paper. The authors did not draw a general conclusion across have been missed in the electronic search.
studies, as between studies there was a wide variety in patient
population, design, treatments and outcome measures. Inclusion criteria
However, most studies show that QoL is relatively low in
people with autism. Moreover, the effect of age was not stud- The inclusion criteria were that a study: (a) concerned par-
ied, despite reports that in the general population QoL ticipants that were diagnosed with autism by clinical con-
decreases with age (StatLine, 2010). Therefore, a direct com- sensus (usually verified with standardized instruments);
parison between the QoL of people with autism and people (b) included a self-report or proxy-report measure of QoL;
without autism is needed in order to control for the effects of (c) used a standardized, valid and reliable measure of QoL;
aging on QoL found in the general population. and (d) addressed a comparison between groups with and
In this study, we investigate how the QoL of people with without autism. Studies concerning people with autism
autism can be described over the entire lifespan. In Study 1, and a co-morbid disorder were included, as this would
we will examine QoL quantitatively by performing a meta- increase generalizability.
analysis on QoL studies. We will describe the magnitude of
the difference between QoL of people (i.e. children, adoles- Obtained studies
cents and adults) with and without autism. As elderly peo-
ple with autism are likely to be underrepresented in the The literature search generated 3231 hits; based on titles
existing studies (Mukaetova-Ladinska et al., 2012), we and abstracts, 42 studies were selected. After full text
conducted Study 2, which will focus on QoL among the screening, 28 out of the 42 studies did not meet inclusion
elderly with autism. In both studies, we explore the effect criteria. Reasons for excluding studies were that the autism
of age as well as other factors that influence QoL. diagnosis was not validated (N = 3), the studies used a non-
We hypothesize that independent of age, QoL will be standardized QoL measure (N = 5), no control group was
lower for people with autism than for people without included (N = 17) or a different type of QoL (family QoL,
autism. Although there will be individual differences in communication QoL) was assessed (N = 3). Of the 14 stud-
people’s life trajectory (Seltzer et al., 2004), we hypothe- ies that met inclusion criteria, 9 studies did not include all
size that age plays a role in QoL, because autism symptoms of the necessary information; authors were contacted and 5
often reduce with age. As people might learn to compen- provided the requested information. This resulted in 10
sate, accept impairments and follow successful treatment studies available for the meta-analysis, with 486 partici-
(García-Villamisar et al., 2002), QoL could improve with pants with autism and 17,776 participants without autism
age. However, a contrasting hypothesis would be that QoL (Table 1). The large number of control participants is
will decrease with age. Age brings about increased respon- mainly due to the use of normative comparison groups. All
sibilities and decreased parental support, which may cause the information in Table 1 was recorded by the first author
impairments to be perceived more intensively in adulthood and verified by the second author.
Table 1. Main characteristics of the studies included in the meta-analysis.
160

Author Cohen’s d Variance Autism N Control N Agea Controlb Informant Questionnaire Diagnosisc Co-morbidityd
Bastiaansen et al. (2004) −0.43 0.04 28 215 9.7 (2.4) Clinicale Self PedsQL CC, SI NM
Bastiaansen et al. (2004) −0.38 0.04 28 215 9.7 (2.4) Clinicale Proxy PedsQL CC, SI NM
Bennet et al. (2005) −0.24 0.17 9 22 40.7 (9.3) Learning Disabilityf Proxy LEC CC, Q NM
Jennes-Coussens et al. (2006) −0.62 0.18 12 13 20.3 (1.3) TD Self WHOQOL-BREF CC, Q NM
Limbers et al. (2009) −2.26 0.05 22 427 9.3 (2.2) TD Proxy PedsQL CC, Q NM
Kamp-Becker et al. (2010) −0.81 0.05 26 124 21.6 (3.4) TD Self WHOQOL-BREF CC, SI M
Kamp-Becker et al. (2011)g −0.20 0.03 40 9947 12.7 (2.6) TD Self ILK CC, SI M
Kamp-Becker et al. (2011)g −1.14 0.02 42 1721 12.7 (2.6) TD Proxy ILK CC, SI M
Shipman et al. (2011)g −0.65 0.03 39 1170 14.8 (1.9) TD Self PedsQL CC NM
Shipman et al. (2011)g −1.69 0.03 39 1384 14.8 (1.9) TD Proxy PedsQL CC NM
Tavernor et al. (2012)g −1.81 0.10 10 1033 10.9 (1.4) TD Self PedsQL CC NM
Tavernor et al. (2012)g −2.58 0.10 11 427 10.9 (1.4) TD Proxy PedsQL CC NM
Kamio et al. (2012)g −0.97 0.01 154 828 27.6 (6.5) TD Self WHOQOL-BREFh CC M
Cottenceau et al. (2012)g 0.34 0.04 26 250 15.0 (2.5) TD Self VSP-Ai CC M

ADHD: attention deficit hyperactivity disorder; CC: diagnosis via clinical consensus; ILK: Inventory for the Assessment of Quality of Life in Children and Adolescents; LEC: Life Experiences Checklist; M:
mentioned; NM: not mentioned (no full assessment); PedsQL™: Pediatric Quality of Life Inventory; Q: questionnaires and rating scales; SI: structured instrument such as structured interviews and obser-
vation schedules; TD: typically developing; VSP-A: Experience and Perceived Health for Adolescents; WHOQOL-BREF: World Health Organization Quality of Life abbreviated version.
aThe age of the autism group.
bWhen possible a TD control group was chosen as a comparison group.
cThe autism assessment procedure as described by the authors.
dHow co-morbidity was addressed.
eBastiaansen et al. (2004) compared to multiple clinical groups (people with ADHD, anxiety disorders, mood disorders and other disorders). Scores were combined into one clinical group by using the

formula for combining groups from the Cochrane handbook (Higgins and Deeks, 2011). The group ‘No diagnosis’ was neither included as a clinical control group (because no Diagnostic Manual of Statis-
tic Disorders–Fourth Edition (DSM-IV) diagnosis could be made) nor TD control group (because there were problems for which they were referred to mental health services).
fBennet et al. (2005) had two comparison groups: (1) high scorers on an autism questionnaire, but no autism diagnosis and (2) low scorers on an autism questionnaire and no autism diagnosis. Group 2 was

chosen as a comparison group since that group did not have any autism symptomatology.
gInformation to calculate effect size obtained through personal communication with the author.
hKamio et al. (2012) measured two subscales from the WHOQOL-BREF: psychological health and social relationships. To calculate the effect size psychological health was chosen, because this subscale

consists of more items, and has a high test reliability, internal consistency, construct validity and a strong correlation with, and high factor loading on, overall QoL (Skevington et al., 2004; Wang et al.,
2006).
iCottenceau et al. (2012) calculated two global scores from the VSP-A; Index 2 without ‘relationships with medical staff’ and ‘affective and sexual life’ dimensions and Index 4 without ‘relationships with

medical staff’ but with the ‘affective and sexual life’ dimension. To calculate an effect size, Index 4 was chosen since this included more dimensions.
Autism 19(2)
van Heijst and Geurts 161

Figure 1. Forest plot of the standardized mean difference (Cohen’s d) and 95% confidence interval of QoL. Negative effect sizes
imply that the QoL is lower in people with autism as compared to controls while positive effect sizes suggest the opposite pattern.
*Effect sizes were calculated separately for self-report and proxy-report. Thus, 14 effect sizes were calculated from 10 studies.

Independent variables We tested the heterogeneity with conventional Q tests

and with the I2 statistic. The I2 statistic estimates how
For each study, the age of the autism participants was coded much of the total variability in the effect size estimates
as a continuous variable. The following categorical variables (composed of heterogeneity and sampling variability) can
were also coded: the respondent to the QoL questionnaire be attributed to heterogeneity among the true effects. We
(self-report or proxy-report), the comparison group (typi- checked for publication bias with funnel plots and the fail-
cally developing (TD) or clinical control group) and the QoL safe analysis (Rosenthal, 1979).
questionnaire utilized (WHOQOL-BREF, Pediatric Quality
of Life Inventory (PedsQL) or other). The study characteris-
tics served as the independent variables in order to determine Results study 1
whether these characteristics moderated the effect size.
Overall result
Based on our qualitative analysis, there were many differ-
Dependent variable
ences in QoL between people with and without autism.
The QoL questionnaires generated continuous outcomes, The most affected domain of QoL seemed to be social
for which a standardized mean difference (Cohen’s d) was functioning (Bastiaansen et al., 2004; Jennes-Coussens
calculated. This effect size is widely used, is easily inter- et al., 2006; Kamio et al., 2012; Kamp-Becker et al.,
pretable and can be calculated from t-test statistics 2010). Other relevant reported findings were that the
(Thalheimer and Cook, 2002; Turner and Bernard, 2006). autism group had fewer friends and more special educa-
tion (Bastiaansen et al., 2004); lower physical health
(Jennes-Coussens et al., 2006); lower QoL relating to
Data analyses
relationships with friends, leisure, affective and sexual
The data were analysed using the Metafor package for R relationships; and placed less importance on activities
(Viechtbauer, 2010). A random effects meta-analysis was with peers and more importance on activities with parents
performed to provide an average effect for the population (Cottenceau et al., 2012).
of studies, as the included studies were assumed to be a Our quantitative analysis showed that the mean effect
random selection of the entire study population. We con- size is large, d = −0.96; 95% confidence interval = −1.39,
ducted a mixed effects meta-analysis to determine the −0.52; range = −2.58 to 0.34 (Figure 1). People with
moderating effects of the study characteristics. Effect sizes autism had a lower QoL than people without autism, z =
were regressed on the study characteristics in a restricted −4.29, p < 0.001. There was significant heterogeneity
maximum likelihood meta-regression (Viechtbauer, 2010). between the effect sizes, τ2 = 0.63, Q(13) = 168.80, p <
162 Autism 19(2)

0.000 difference in effect size between studies that used the

WHOQOL-BREF questionnaire and those that used the
PedsQL, p = 0.446. Studies concerning a self-report (d =
−0.63, p = 0.018) and studies concerning a proxy-report (d
0.107

= −1.39, p < 0.001) both showed a difference in QoL

between people with and without autism. The difference
Standard Error

between these two estimates approached significance, z =

−1.87, p = 0.062, indicating that a larger difference in
0.214

effect size with a proxy informant as compared to self-

reports made by people with autism. As five of the six
studies that included a proxy informant had young partici-
0.321

pants (aged 9.3–14.8 years old), we tested for an interac-

tion between age and respondent, but this was not
significant. Hence, the moderator analyses suggest that
0.428

when taken together, control group, questionnaire and

-3.00 -2.50 -2.00 -1.50 -1.00 -0.50 0.00 0.50 respondent moderate the effect size, but only the respondent
Observed Outcome is a marginal moderator when other moderators are not
considered.
Figure 2. Funnel plot of effect sizes (Cohen’s d) against the
standard errors. The dots represent the studies included in the
analysis. Discussion study 1
The meta-analysis shows a large difference in QoL between
0.001, I2 = 94.6%. Leave-one-out sensitivity analyses indi- people with and without autism. Age does not have a mod-
cated that the effect remained significant regardless of erating effect, which might be due to the mean age (range
which study was dropped (Cohen’s d ranged from −1.06 to 9.3–40.7) of the participants; the elderly with autism were
−0.84, all p < 0.001). A QQ-plot confirms that there is a underrepresented in the meta-analysis.
normal distribution of effect sizes. Studies that assess QoL with different types of ques-
Visual inspection and a regression test for funnel plot tionnaires do not produce different results, which indicates
asymmetry indicated no asymmetry in the funnel plot (z = a high comparability between the various QoL measures.
−0.40, p = 0.696; Figure 2). As the number of effect sizes Studies that compared to either a TD or a clinical control
is 14, the fail-safe N should be greater than 14 × 5 + 10 = group do not produce different results; however, only three
80, that is, the fail-safe N = 1544. Thus, there is no indica- studies included a clinical control group.
tion of publication bias. The informant was found to be the only factor that may
influence QoL. Parents rate the QoL of their children with
autism lower than the children themselves do (Bastiaansen
Moderator analysis
et al., 2004; Kamp-Becker et al., 2011). There may be sev-
At least part of the heterogeneity in the model may be due to eral reasons for this discrepancy. First, parents of children
the influence of moderators. First, age was added into the with health concerns generally report a lower QoL than
model but this did not have a moderating effect, p = 0.265. children themselves (Upton et al., 2008), and there is a
Second, we added control group, questionnaire and respond- greater agreement for observable (e.g. physical) function-
ent to the model to explore whether these would moderate ing than for non-observable (e.g. emotional or social QoL)
the effect size. The omnibus test was significant, QM (5) = functioning (Eiser and Morse, 2001). Since social impair-
28.46, p < 0.001, and the three moderators were significant ments form a substantial part of the autism symptomatol-
(control group, p = 0.002; questionnaire, p = 0.005; respond- ogy, this may explain the discrepancy between self- and
ent, p = 0.004). The estimated amount of residual heteroge- proxy-report. Second, the discrepancy may be due to the
neity was equal to τ2 = 0.19, suggesting that (0.63-0.19)/0.63 difficulties that people with autism have when reporting on
= 69.8% of the total heterogeneity could be accounted for by their own QoL. They may have a deficit in self-representa-
the included moderators. There was still a significant tion that affects the identification of emotional states in
amount of residual heterogeneity, QE(8) = 37.44, p < 0.001, others as well as in themselves (Johnson et al., 2009;
indicating that study characteristics not considered in the Lombardo et al., 2007). In addition, they may lack the
model also moderate the effect size. emotional vocabulary, which could affect their ability to
Further inspection of the moderators with univariate respond to items about their mood and feelings (Tavernor
analyses revealed that there was no significant difference et al., 2012). However, this is debatable as it has been
in effect size between studies that compared people with reported that self-reports of QoL from children with autism
autism to a TD or clinical group (p = 0.153). There was no are valid and reliable (Shipman et al., 2011), and that
van Heijst and Geurts 163

Table 2. Group means and standard deviations for age, gender, estimated IQ and Social Responsiveness Scale Adult version score.

Variable Groups Statistics

Autism (N = 24) Control (N = 24)

Age 63.7 (7.4) Range 53–83 63.5 (8.0) Range 51–84 F(1,46) = 0.01, p = 0.911, η2 = 0.00
Gender 19M, 5F 18M, 6F χ2(1,N = 48) =.12, p = .731
IQ 109.5 (10.3) 109.6 (7.8) F(1,45) = 0.001, p = 0.982, η2 = 0.00
SRS-A 94.9 (26.1) 25.7 (11.2) F(1,46) = 143.11, p < 0.001, η2 = 0.76

SRS-A: Social Responsiveness Scale Adult version.

children with autism have sufficient ability to rate their autism. Second, we explored whether psychological prob-
emotions appropriately (Hobson et al., 2006). Third, lems related to psychopathology also influence QoL of the
children may perceive their limited social and emotional elderly with autism because psychological health is an
functioning as a less severe problem, as compared to their important part of QoL (WHO, 1995) and co-morbid psy-
parents. This is illustrated by a quote of a parent: ‘I chopathology is common among people with autism
answered the question producing negative scores, but upon (Geurts and Jansen, 2012).
reflection I think my child actually prefers being alone’
(Tavernor et al., 2012). Therefore, the discrepancy between
parent- and self-report seems to be derived from a percep-
Methods Study 2
tual difference concerning children’s activities and apprais- Participants
als, and not from a lack of parental knowledge. When
parents are asked to respond as they think their child The autism group consists of intellectually able elderly
would, the correlation with self-report increases (Sheldrick with autism (N = 24), who were diagnosed with autism in
et al., 2012). In conclusion, disagreement between parent’s their adult life. Individuals were included if they had
and children’s reports of QoL is, in itself, unlikely to indi- received a diagnosis of autism via clinical consensus, had
cate that either is wrong or right, but rather is a conse- a high score (≥60) on the Social Responsiveness Scale
quence of each individual’s beliefs about the child’s health Adult version (SRS-A; Noens et al., 2012) or if they met
and well-being. Parent-reports, as an addition to self- both criteria. Most of the participants were included in a
reports, can provide another perspective, and thus, produce previously published study on cognitive functioning in the
a greater understanding of QoL in autism. elderly with autism (Geurts and Vissers, 2012). We
included one additional participant who filled out the QoL
questionnaire but who was not tested for the original study.
Study 2: new data on QoL in the TD controls (N = 24) were included if they did not have
autism (based on self-report and SRS-A scores < 60) or
elderly with autism any other psychiatric disorder, and did not have any rela-
One shortcoming observed in the meta-analysis was the tives diagnosed with autism. For more details about the
lack of studies that assessed QoL in elderly with autism. participants, see Table 2.
Therefore, in Study 2 we conducted an empirical study in
order to focus on QoL in the elderly with autism. Moreover,
Materials
there was a large amount of unexplained heterogeneity in
the meta-analysis even after including several potentially Quality of life. There is currently no instrument available to
important moderators (control group, questionnaire and measure QoL specifically in people with autism. A benefit
informant). Unfortunately, information regarding the par- of a generic measure of QoL, such as the RAND-36 (Van
ticipants’ symptom severity (Eaves and Ho, 2008; der Zee and Sanderman, 1993), is that it is easier to com-
Kuhlthau et al., 2010), IQ (Howlin et al., 2004; McGovern pare across groups of people. The RAND-36 (also known
and Sigman, 2005) and early language development as SF-36) is a brief and comprehensive 36-item self-report
(Billstedt et al., 2005; Szatmari et al., 2003) were too health-related QoL questionnaire. It includes eight of the
sparse to include in the meta-analysis, while these partici- most frequently measured health concepts: physical func-
pant characteristics are relevant predictors of adult out- tioning, role limitations caused by physical health prob-
come. Hence, in Study 2 we assessed symptom severity lems, role limitations caused by emotional problems,
and intelligence in relation to QoL. Moreover, two more social functioning, emotional well-being, energy/fatigue,
moderators of QoL were explored. First, we know that pain and general health perceptions (Ware, 2000). The
QoL is affected in early stages of cognitive decline (Bárrios Dutch manual of the RAND-36 (Van der Zee and Sander-
et al., 2013); therefore, we investigated whether regular man, 1993) was used to calculate the total scores. The total
cognitive mistakes influence QoL in the elderly with score is the mean of the aforementioned eight scale scores.
164 Autism 19(2)

A higher score indicates a better QoL. Van der Zee and groups in order to conduct a linear regression analysis. Age,
Sanderman (1993) conclude that the RAND-36 is a valid, IQ and symptom severity were tested as potential predictors
reliable and sensitive measurement of QoL. Internal con- of QoL. Exploratory regression analyses on the combined
sistency for each of the scale scores range between α = group were performed to test interaction effects of age, IQ
0.71 and 0.92 (mean is 0.84). and symptom severity with group, as well as the predictive
powers of psychological and cognitive problems on QoL.
Verbal intelligence. The Dutch Adult Reading Test (DART; A boxplot revealed three outliers in the TD control
Schmand et al., 1992) is a list of 50 words with irregular group that had low scores on the RAND-36 (more than
spelling that are to be read aloud. The number of correctly 1.5× the interquartile range (IQR)). All analyses were per-
pronounced words was used to calculate a DART-IQ score. formed with and without these outliers. When there was no
It is relatively insensitive to cognitive impairment caused difference in the pattern of findings, we reported the results
by neurological disorders and is a strong predictor of intel- based on the full sample. When a difference was found, we
ligence (Schmand et al., 1998). The psychometric proper- reported the results of both analyses.
ties are excellent as the interrater reliability is 0.96 and the
internal consistency is 0.91 (Schmand et al., 1992).
Results Study 2
Symptom severity. The SRS-A (Noens et al., 2012) is a Main outcome
64-item self-report rating scale that serves as an index of
severity of deficits in the autism spectrum. Five domains The autism group reported a lower QoL (M = 66.7, SD =
were assessed: social awareness, social information pro- 16.6) compared to the TD group (M = 82.0, SD = 13.2),
cessing, capacity for reciprocal social communication, F(1,46) = 12.5, p = 0.001, η2 = 0.21. To test whether age,
social anxiety/avoidance and autistic preoccupations and IQ and symptom severity were predictors of QoL, a regres-
mannerisms. This scale has excellent internal consistency, sion analysis was conducted. Results showed that the
α = 0.94–0.95 (Constantino and Todd, 2005). model was significant, F(3,43) = 4.06, p = 0.013, η2 =
0.17. Age and IQ were not significant, but symptom sever-
Psychological problems. The symptom checklist (SCL-90; ity did significantly predict QoL, β = −0.44, p = 0.002,
Arrindell and Ettema, 1986) is a widely used multidimen- with more symptoms relating to a lower QoL. However, all
sional 90-item self-report symptom inventory that screens the individuals in the autism group had more severe autism
for a broad range of psychological problems. Subscales are symptoms than the TD control group, and so this seems to
anxiety, agoraphobia, depression, somatisation, insuffi- be an effect of group. An additional regression analysis
ciency of thought and behaviour, distrust and interpersonal was run on only the autism group; this showed that for
sensitivity, hostility and sleeping problems. The SCL-90 people with autism, symptom severity did not predict QoL,
has good test–retest reliability, internal consistency and F(1,22) = 0.044, p = 0.836.
concurrent and discriminant validity (Derogatis, 1977).
Exploratory regression analyses
Cognitive problems. The Cognitive Failures Questionnaire
(CFQ; Broadbent et al., 1982; Ponds et al., 1997) is a Exploratory regression analyses were performed to deter-
25-item self-report questionnaire that assesses common mine whether age, IQ and symptom severity had a differ-
types of cognitive mistakes in perception, memory and ent impact on QoL within the two groups. There were
motor function (e.g. misplacing one’s keys or forgetting neither interaction effects nor main effects of age, IQ or
appointments). Internal consistency is 0.91, and test–retest symptom severity. The effect of group was present in most
reliability over a 2-month period is 0.82 (Vom Hofe et al., models (results can be obtained from the first author).
1998). Furthermore, we explored whether cognitive problems
and psychological problems were potential predictors of
Of the aforementioned materials, the SRS-A was specifi- QoL. The direct group comparison showed that the autism
cally designed for an autism population, and the SCL-90 group reported more cognitive problems (M = 45.1, SD =
(Spek et al., 2013) has been used in an autism population 13.8) than the TD group (M = 30.9, SD = 11.5), F(1,46) =
before. The RAND-36, DART and CFQ have not previ- 15.1, p < 0.001, η2 = 0.25. Moreover, the autism group
ously been used in an autism population. reported more psychological problems (M = 166.3, SD =
36.7) than the TD group (M = 120.2, SD = 42.5), F(1,46) =
16.2, p < 0.001, η2 = 0.26. The regression analysis showed
Data analyses that there were main effects for cognitive problems and
First, a univariate analysis of variance was conducted to psychological problems, but these effects disappeared
determine the difference in QoL between people with and when outliers where removed. This suggests that these
without autism. Next, we combined the autism and TD effects were due to influential outlying data points.
van Heijst and Geurts 165

Inclusion of Study 2 in the meta- sample aged 10 to 19 years old (Cottenceau et al., 2012).
analysis This coincides with the finding that adolescents improve in
the reciprocal social interaction domain (Seltzer et al.,
As this study provides unique information about QoL in 2003). However, overall there is no substantial evidence of
the elderly with autism (Cohen’s d = −1.02, variance 0.10), QoL improving or deteriorating over the lifespan. This
it was also included in the meta-analysis; this did not sig- lack of an age effect should be interpreted with caution; the
nificantly change any of the findings reported in Study 1. number of included studies in the meta-analysis is rela-
tively small, and the distribution of ages is skewed towards
Discussion Study 2 young people. While Study 2 was a good addition to the
meta-analysis, the number of studies concerning adults
This study shows a large difference in QoL between peo- and the elderly remained small, and thus the effect of age
ple with and without autism. Factors that are likely to have could not be studied optimally.
an effect on QoL – intelligence, symptom severity and lan- Several limitations might complicate the interpretation
guage development – could not be studied in the meta- of our findings. The participants in Study 2 had an esti-
analysis due to the lack of information in the included mated IQ in the normal range and received the autism
studies. Fortunately, some insight into these factors could diagnosis in their adult life. Therefore, they may not be
be gained from Study 2. Intelligence – as estimated by the representative of the whole autism population. Another
DART-IQ – was not found to have an effect on QoL. It caveat is the small amount of studies in the meta-analysis.
should be noted that all participants were intellectually There was a sufficient amount of studies to conduct a
able (IQ range 81–130), and the effect of intelligence may meta-analysis, but unfortunately, another 17 studies with
be more pronounced in the lower ranges (Howlin et al., valuable information about QoL in autism could not be
2004; McGovern and Sigman, 2005). Severity of symp- included because they did include a control group. These
toms did not influence QoL, which is contradictory to pre- studies describe QoL, or they use QoL to measure treat-
vious reports (Eaves and Ho, 2008; Kuhlthau et al., 2010). ment efficacy. Including a control group in these types of
This might be due to the small sample size that resulted in studies would generate a wealth of relevant information
insufficient power to detect such an effect. However, an regarding QoL in people with autism. We also recommend
alternative interpretation could be that among the elderly, including measurements that assess variables that might
symptom severity may no longer be a relevant factor. influence QoL because in the current meta-analysis much
Unfortunately, there was no information on language heterogeneity was left unexplained. As IQ, symptom
development in Study 2. For the elderly, it is often not fea- severity and language development are thought to be
sible to recover information about language development important factors in adult outcome, it is recommended that
in childhood. However, this is still a factor that, when fea- future studies on QoL at least take these into account, so it
sible, should be studied. The exploratory analysis showed can be determined whether these factors indeed explain
that psychological problems or cognitive problems did not some of the heterogeneity. Moreover, a longitudinal study
contribute to QoL over and above the effect of group. to examine the age factor would be ideal, but a well-bal-
anced cross-sectional study could already improve our
understanding of the developmental trajectory of QoL in
General discussion
people with autism.
Our main aim was to test if there was a difference in QoL The large difference in QoL between people with and
between people with and without autism and to explore the without autism warrants that much work needs to be done
factors that influence QoL. The meta-analysis shows that to help people with autism reach a higher level of QoL.
there is a large difference in QoL between people with and Environmental factors and treatment can contribute to this.
without autism. This effect was observed in children, ado- A higher QoL is related to early diagnosis (Kamio et al.,
lescents, adults and the elderly. 2012) and a larger amount of perceived support (Renty and
The hypothesis that age affects QoL is not supported by Roeyers, 2006). QoL improves with supported employ-
the present results. This indicates that individual differ- ment (García-Villamisar et al., 2002), residential (Gerber
ences seem to be more prominent than an overall trend. et al., 2011) and leisure programmes (García-Villamisar
This is in line with previous research that also found no and Dattilo, 2010). Hence, it is important that organiza-
associations between QoL and age (Kamio et al., 2012; tions that care for people with autism take all of the above
Kamp-Becker et al., 2011). To the contrary, Bennet et al. into account so that the QoL of people with autism can be
(2005) reported that increasing age was associated with improved.
decreasing QoL. However, they did not include a subjec- The meta-analysis also shows that the focus of research is
tive QoL assessment, and their results could reflect deteri- on young people (see also Mukaetova-Ladinska et al., 2012).
orating circumstances, and not necessarily life satisfaction. For a comprehensive picture of autism, more attention should
When focussing solely on relationships with friends (one be paid to adults and the elderly. In return, this can also lead
aspect of QoL), QoL did seem to improve with age in a to valuable information for young people with autism. A
166 Autism 19(2)

better understanding of the developmental trajectory of Cottenceau H, Roux S, Blanc R, et al. (2012) Quality of life of
autism means that interventions can be adjusted to the spe- adolescents with autism spectrum disorders: comparison to
cific needs of people with autism across the lifespan. adolescents with diabetes. European Child & Adolescent
Psychiatry 21: 289–296.
Derogatis LR (1977) SCL-90: Administration, Scoring and
Acknowledgements
Procedure Manual-I for the R (Revised) Version. Baltimore,
We would like to thank Anika Bexkens and Laura Ruzzano for their MD: The Johns Hopkins University School of Medicine.
statistical advice regarding the meta-analysis. Moreover, we also Eaves LC and Ho HH (2008) Young adult outcome of autism
thank Laura Ruzzano for her helpful grammar-related comments. spectrum disorders. Journal of Autism and Developmental
Disorders 38: 739–747.
Funding Eiser C and Morse R (2001) Can parents rate their child’s health-
related quality of life? Results of a systematic review.
This work is part of the research program “Autism and Aging: A
Quality of Life Research 10: 347–357.
Double Jeopardy”, which is financed (VIDI grant number 452-10-
Esbensen AJ, Seltzer MM, Lam KSL, et al. (2009) Age-related
003) by the Netherlands Organization for Scientific Research
differences in restricted repetitive behaviors in autism
(NWO).
spectrum disorders. Journal of Autism and Developmental
Disorders 39: 57–66.
Note García-Villamisar D, Wehman P and Navarro MD (2002)
1. Autism is used here as a term for the entire autism spec- Changes in the quality of autistic people’s life that work in
trum, consisting of autistic disorder, Asperger syndrome and supported and sheltered employment: a 5-year follow-up
pervasive developmental disorder–not otherwise specified study. Journal of Vocational Rehabilitation 17: 309–312.
(PDD-NOS). García-Villamisar DA and Dattilo J (2010) Effects of a leisure pro-
gramme on quality of life and stress of individuals with ASD.
Journal of Intellectual Disability Research 54: 611–619.
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