Quality of Life of Taiwanese Adults with Autism Spectrum Disorder
Citation: Lin L-Y (
Quality of Life of Taiwanese Adults with Autism Spectrum Disorder
Ling-Yi Lin 0
Katsuaki Suzuki, Hamamatsu University School of Medicine, Japan
0 Department of Occupational Therapy, College of Medicine, National Cheng Kung University , Tainan , Taiwan
Background: To date, few recent studies have investigated the quality of life of adults with autism spectrum disorder (ASD). It remains unclear how individuals with ASD view their own quality of life. Objective: The primary purpose of this study was to compare the quality of life scores among adults with ASD with those of a non-ASD control group and the Taiwanese health population reference group. Methods: The study comprised 41 adults with ASD (M age = 26.9, SD = 5.0), and without intellectual disabilities (IQ.70). A comparison sample of 41 adults without ASD was selected by matching the age and sex of the participants with ASD. A validated measure, the Taiwanese version of the World Health Organization Quality of Life-BREF (WHOQOL-BREF), was used. Independent t-tests were performed to examine the differences in the quality of life between groups. Results: The highest quality of life was scored in the environment domain, followed by the physical health and psychological health domains. The lowest quality of life score was found in the social relationship domain. Adults with ASD scored significantly lower in all domains than did the non-ASD control group. Additionally, adults with ASD scored significantly lower in the physical health, psychological health, and social relationship domains than did the Taiwanese health population reference group. Comorbid psychiatric disorders, self-rated health status, and perceived happiness were correlated with quality of life among adults with ASD. Conclusion: The preliminary findings suggest that adults with ASD need more supportive social contexts and interventions to promote their quality of life. Based on our findings, social relationship must be considered in designing and applying treatment programs for adults with ASD.
Data Availability: The authors confirm that all data underlying the findings are fully available without restriction. All relevant data are within the paper and its
Supporting Information files.
Funding: Support for this research was provided by grant NSC 101-2815-C-006-083-B and NSC 102-2314-B-006-068 from the Taiwan National Science Council.
The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing Interests: The author has declared that no competing interests exist.
Autism spectrum disorder (ASD) is characterized by deficits in
social-emotional reciprocity, nonverbal communicative behaviors
used for social interaction, and developing and maintaining
relationships across various contexts, and the presence of restricted
repetitive patterns of behavior, interests, or activities . The
Centers for Disease Control and Prevention in the United States
estimated that an average of 1 in 68 children has ASD . The
prevalence of ASD is reportedly increasing in Western countries as
well as in Taiwan . In 2007, the annual rate of increase in ASD
was 16.52%, which was the highest among all disabilities . The
number of identified persons with ASD in Taiwan was 13,366 in
2013 . Almost 25% of those with ASD were 18 years old and
older. Within 10 years, approximately 7,000 more people in
Taiwan with ASD will become 18 years old and older creating
increasing challenge in adult placement. Many experts and
researchers across nations have started to address the issues and
problems faced by adults with ASD .
Increasing attention has been paid to studying the outcomes of
individuals with ASD during adolescence and adulthood in
Western countries . Functional independence and employment
are major factors related to outcomes in adulthood. Research in
Western countries indicates that many adults with ASD need high
levels of assistance and care . Previous studies also reported
that people with ASD had poor outcomes in adulthood and a low
rate of employment is common for adults with ASD across
different countries [10,1316].
Quality of life refers to an individuals general wellbeing,
including emotional, social, and physical aspects of the individuals
life . Previous studies have indicated that quality of life is
associated with various health conditions (such as pain, mental
health problems) among individuals with disabilities [18,19]. Over
recent years, quality of life has become a critical measure of
treatment outcome for people with mental and physical health
concerns. Researchers systematically reviewed literature and
suggested using quality of life as indicators to evaluate outcomes
for adults with ASD [20,21]. They suggest that practitioners can
effectively establish person-centered planning in service delivery
when a person with ASD provides his or her subjective quality of
life. This may lead to more effective intervention.
While some studies  on quality of life in adults with ASD
have been published in recent years, only a handful of recent
studies have investigated the quality of life of adults with ASD by
using a cross-culturally standardized self-reported instrument (e.g.,
the WHOQOL-BREF questionnaire) . Previous studies
using the WHOQOL-BREF questionnaire have yielded
inconsistent results. Jennes-Coussens and colleagues  evaluated 13
young adults with Asperger syndrome and found lower quality of
life in the domains of physical health and social relationship when
compared with healthy controls. They reported that no differences
in the psychological and environmental domains were observed,
whereas Kamp-Becker and colleagues  indicated that
individuals with ASD have impairments in the psychological health
domain and the overall quality of life score. In Japan, Kamio and
colleagues  only examined the psychological and social aspects
of quality of life in the participants with ASD, indicating that
individuals with ASD reported significantly lower scores of the
psychological and social domains than those of the healthy
Japanese population. However, no studies have addressed the
quality of life of adults with ASD in Taiwan or China.
This study addressed a major concern in the existing published
research: the quality of life of adults with ASD. The aims of the
study were to examine the quality of life of adults with ASD in
Taiwan, and to compare with the quality of life of a health control
group and the Taiwanese health population reference group.
Thus, in the current study, we addressed the following questions:
(1) How do adults with ASD rate their own quality of life? (2) How
do adults with ASD differ from adults without ASD and the
Taiwanese health population reference group with respect to their
views on quality of life? (3) How is quality of life related to age,
gender, education level, employment status, smoking habits,
drinking habits, comorbid psychiatric disorders, self-rated health
status, and perceived happiness?
A cross-sectional survey was undertaken during the period
August 2013 to September 2013.
Ethical clearance for the study was received from the National
Cheng Kung University Hospital internal review board
(A-BR101-074). Adults with ASD were recruited from the hospital clinic
and local autism groups by using fliers. Adults without ASD were
recruited using study flyers that were posted on college campuses
and in libraries, local supermarkets, and other public areas. The
investigators fully explained the procedures to all of the
participants, from whom written informed consent was obtained
before enrolling in the study.
Adults with ASD. Forty-one individuals with ASD (mean age
26.9, range 2037 years) were recruited for this study. There were
30 males and 11 females. All the participants had been diagnosed
with autism spectrum disorders by a registered psychiatrist using
the Diagnostic and Statistical Manual IV Text Revision
(DSM-IVTR) criteria . Intellectual disabilities (IQ,70) were excluded.
Thirty-five participants were diagnosed with Asperger syndrome
and six individuals were diagnosed with pervasive developmental
disorder not otherwise specified (PDD-NOS). In order to
determine the reading and writing skills of the participants, the
participants were asked to read a paragraph of the newspaper.
Immediately after reading the paragraph, participants were asked
to write five words that exist in the paragraph. All adults with ASD
were able to read and write Mandarin words and phrases.
Adults without ASD. The control group comprised 122
adults without ASD from the community. They were recruited
through advertisement in the local communities. The exclusion
criteria were (a) any developmental disabilities; and (b) intellectual
disabilities (IQ,70). A comparison sample was selected by
matching the age and sex of the adults without ASD with those
of the ASD group. Finally, we selected 41 adults without ASD.
There were 30 males and 11 females, with a mean age of 26.9
years. All adults without ASD were able to read and write
Mandarin words and phrases. Table 1 lists the sample
characteristics. There were significant differences in educational level,
employment status, comorbid psychiatric disorders, and drinking
habits between ASD and non-ASD groups.
Demographic information. The demographic
characteristics included age, sex, diagnosis, education level, employment
status, occupation, marital status, comorbid psychiatric disorders,
and smoking and drinking habits.
WHOQOL-BREF Taiwan version. The Taiwanese version
of the WHOQOL-BREF contains 28 items classified into the same
four domains (physical health, psychological health, social
relationship, and environmental) as the standard
WHOQOLBREF questionnaire . Items were scored on a five-point scale
to determine a raw item score. Raw item scores can be
transformed the domain scores (range from 4 to 20). The
transformed domain scores were used in the analyses. Higher
transformed scores indicate better quality of life. The
WHOQOLBREF Taiwan version has been shown to be internally consistent
and to have strong construct validity . The internal consistency
coefficients ranged from 0.78 to 0.88 for the four domains for the
sample in the present study.
Self-rated health status and perceived happiness. The
participants were asked to rate two 5-point Likert scale questions:
How do you rate your overall health? and Overall, how happy
do you feel currently? Self-rated health status was rated from 1
(extremely bad) to 5 (extremely good). Perceived happiness was
rated from 1 (extremely unhappy) to 5 (extremely happy).
We used SPSS 17.0 for Windows (SPSS Inc., Chicago, IL) to
analyze the data and descriptive statistics to examine the
demographic data and outcome measures for the study variables.
Independent t-tests and x2 tests were performed to examine the
differences between group demographic data and outcome
measures. A series of ANCOVAs was conducted to examine
whether differences in demographic characteristics accounted for
differences in four domains in the two groups. Fishers exact tests
were used when more than 20% of the values were less than the
expected value of 5 in a contingency table. Bivariate correlations
were computed to identify significant relationships among all
variables. A p-value of.05 was considered significant.
Table 2 lists the WHOQOL-BREF results for the present
sample. For adults with ASD, the mean total score was 49.5611.6.
The highest quality of life score was reached in the environment
domain (13.562.8), followed by the physical health (13.163.4)
ASD M (SD) or n (%)
Non-ASD M (SD) or n (%)
x2 = 8.5**
x2 = 4.1**
x2 = 2.2
x2 = 8.9**
x2 = 0.7
x2 = 4.9*
t = 24.2***
t = 23.7**
t = 23.7**
t = 25.0***
T = 22.2*
x2 = 11.9*
x2 = 23.3***
High school and below
Comorbid psychiatric disorders
Overall quality of life
Self-rated perceived happiness
and the psychological health (11.863.5) domains. The lowest
quality of life score was in the social relationship domain
(11.163.5). Within the ASD group, the scores of the environment
and physical health domains were significantly higher than scores
on the psychological health and social relationship domains.
For non-ASD control group, the mean total score was
58.166.0. The highest quality of life score was reached in the
physical health domain (15.361.6), followed by the environment
(14.761.9) and social relationship (14.161.5) domains. The lowest
quality of life score was in the psychological health domain
(14.062.0). There were no significant differences in the scores of
the four domains within the non-ASD control group.
When comparing the WHOQOL-BREF scores of adults with
ASD to a non-ASD control group, the scores of the participants
with ASD were significantly lower in all domains and the overall
score. The results indicated that adults with ASD rated their
ASD M (SD) or n (%)
Non-ASD M (SD) or n (%)
quality of life lower than did adults without ASD. Figure 1 shows
the variability among people in each group.
There were significantly differences in the educational level,
employment status, comorbid psychiatric disorders, and drinking
habits between the two groups. The educational level,
employment status, comorbid psychiatric disorders, and drinking habits
were examined independently as covariates. When the educational
level, comorbid psychiatric disorders, and drinking habits were
entered separately as covariates, the observed differences in the
environmental domain became nonsignificant. Once the
employment status was entered into the model as a covariate, the
observed differences in the environmental domain remained
significant. The observed differences in domains of physical
health, psychological health, and social relationship remained
significant when these variables were entered as covariates.
The Taiwanese health population reference group comprised
9107 health individuals, with a mean age of 36.1 years . The
mean values of the physical health, psychological, social
relationship, and environmental domains of the WHOQOL-BREF
among the Taiwanese health population reference group were
15.3161.93, 13.8062.19, 14.2262.05, and 13.3362.05,
respectively. Compared to the Taiwanese health population reference
group, our ASD sample scored lower in all WHOQOL-BREF
domains. The mean scores of the physical and psychological
health domains were one standard deviation below the normative
population mean. The average score of the social relationship
domain was 1.5 standard deviations below the normative
population mean. The mean score of the environment domain
was close to the normative population mean.
Table 2 also shows self-rated health status and perceived
happiness of the participants. Eleven adults with ASD rated their
health status as bad and extremely bad. Fourteen individuals rated
their health status as good and extremely good. The rest of the
participants reported the health status as not good and not bad.
Fifteen adults with ASD reported perceived unhappiness and
extreme unhappiness. Only nine individuals reported perceived
happiness as happy and extremely happy. Adults with ASD were
less likely to rate their health status as good and extremely good
(34.1% vs. 61.0%) and perceived happiness as happy and
extremely happy (22.0% vs. 63.4%) than adults without ASD.
In addition, it is found that age, gender, level of education, and
employment status were not related to quality of life for adults with
ASD and without ASD. Comorbid psychiatric disorders (r = 2.44,
p,.01), self-rated health status (r = .82, p,.001), and perceived
happiness (r = .78, p,.001) were positively related to quality of life
among adults with ASD. For non-ASD group, drinking (r = 2.47,
p,.01), subjective health status (r = .41, p,.05), and perceived
happiness (r = .75, p,.001) were related to quality of life. Overall,
self-rated health status and perceived happiness were correlated
with quality of life for both adults with and without ASD.
This study examined the quality of life of adults with ASD, as
compared with the quality of life of a non-ASD control group and
the Taiwanese health population reference group. We determined
three primary findings. First, the lowest quality of life score for
ASD participants was in the social relationship domain. Second,
participants with ASD scored significantly lower in all domains
than did the non-ASD control group. Third, comorbid psychiatric
disorders, self-rated health status, and perceived happiness were
correlated with quality of life among adults with ASD. No
significant relationships were found between other demographic
characteristics and quality of life.
Consistent with the studies of Jennes-Coussens et al.  and
Kamp-Becker et al. , we found that the lowest quality of life
score was observed in the social relationship domain. As expected,
adults with ASD rated the lowest score in the social relationship
domain, which reflects their core symptoms of ASD. The second
last scores were in the psychological health domain. Kamio et al.
 and Kamp-Becker et al.  indicated that adults with ASD
having comorbid psychiatric disorders would report lower scores
in the psychological health domain. In this study, we found that
eight individuals with ASD had comorbid psychiatric disorders
such as depression, anxiety, and obsessive compulsive disorder.
Consistent with a previous study , we found that adults with
ASD had significantly lower levels of overall quality of life than
those of a non-ASD control group. Specifically, our results
confirmed the findings of three previous studies , which
have indicated that adults with ASD scored lower in the social
domain than did those without ASD. These individuals with ASD
were aware of their social disability and perceived their social
deficits to impact negatively on their quality of life. This suggests
that adults with ASD need support to facilitate and maintain social
functioning. Designing and applying social relationship treatment
programs should be considered for adults with ASD.
Adults with ASD in the present study rated scores lower in
physical health than the non-ASD controls, which was consistent
with previous studies [25,27]. Although impairments in physical
health are not key symptoms of ASD, previous studies have
indicated that factors such as daily living skills and sensory
modulation problems may influence the physical health scores
among adults with ASD [25,27]. This suggests that potential
factors associated with quality of life should be the focus of future
Previous studies have not reported significant differences in the
environmental domain between ASD and non-ASD groups
[25,27]. By contrast, adults with ASD in the current study rated
lower scores in environmental domain than non-ASD participants.
The environmental domain comprises the perception of security,
financial burden, home environment, availability of medical and
social care, availability of new information, acquisition of skills,
participation in recreation or leisure, transportation, and other
environmental factors . Over half of adults with ASD in the
current study were unemployed. Adults with ASD were employed
typically lived on small salaries [10,13,15]. The rate of college and
university attendance was substantially low for adults with ASD
[15,16]. Additionally, adults with ASD may have difficulties in
engaging in recreational and leisure activities because of a lack of
adequate autism-focused adult services . This may explain the
low scores in the environmental domain rated by adults with ASD.
Furthermore, the same variables related to quality of life were
found for both adults with and without ASD. They reported that
self-rated health status and perceived happiness were correlated
with their quality of life. Our findings are in line with the reports of
Burgess and Gutstein  and Renty and Roeyers  who
showed that subjective perspectives of individuals with ASD are
crucial indicators of quality of life. Future research is needed.
The major limitations of this study were the small sample size
and purposive sampling. The investigator acknowledges that the
small sample size may have generated biased the results. In
addition, inferential statistics such as the regression analysis were
not conducted due to the small sample size. Future studies should
use larger samples and instruments of potential factors.
In summary, adults with ASD rated their quality of life
significantly lower than adults without ASD did. The preliminary
findings of this study are relevant for interventions in adults with
ASD. Adults with ASD in the present study demonstrated a clear
need to improve their social ability to function in and adapt to
society. The low scores in the social relationship domain indicate
that therapeutic interventions are required for adults with ASD.
Social relationship should be a focus in designing and applying
treatment programs. Additionally, practitioners have to consider
the presence of comorbid psychiatric disorders among some adults
with ASD to address their psychological well-being. The potential
factors associated with quality of life highlight new questions that
are worthy of future research. Replication of these findings with
larger samples is needed.
I thank the individuals who participated in this research and the autism
associations in Taiwan. Special thanks to Miss Chia-Fang Wu, for her
assistance in data collection.
Conceived and designed the experiments: LL. Performed the experiments:
LL. Analyzed the data: LL. Contributed reagents/materials/analysis tools:
LL. Wrote the paper: LL.
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