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Autism Research - 2022 - Zeidan - Global Prevalence of Autism A Systematic Review Update
Autism Research - 2022 - Zeidan - Global Prevalence of Autism A Systematic Review Update
See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
Received: 7 October 2021 Accepted: 14 February 2022
DOI: 10.1002/aur.2696
REVIEW ARTICLE
1
Montreal Neurological Institute-Hospital, Abstract
Faculty of Medicine & Health Sciences, McGill
University Montreal, Montreal, Canada
Prevalence estimates of autism are essential for informing public policy, raising
2
Department of Psychiatry, Oregon Health and
awareness, and developing research priorities. Using a systematic review, we syn-
Science University, Portland, Oregon, USA thesized estimates of the prevalence of autism worldwide. We examined factors
3
Population Health Sciences, Department of accounting for variability in estimates and critically reviewed evidence relevant
Pediatrics, Waisman Center, University of for hypotheses about biological or social determinants (viz., biological sex,
Wisconsin-Madison, Madison, Wisconsin, USA
4
sociodemographic status, ethnicity/race, and nativity) potentially modifying prev-
Department of Global Health and Population,
Harvard T H Chan School of Public Health,
alence estimates of autism. We performed the search in November 2021 within
Boston, Massachusetts, USA Medline for studies estimating autism prevalence, published since our last system-
5
Autism Speaks, New York City, New atic review in 2012. Data were extracted by two independent researchers. Since
York, USA 2012, 99 estimates from 71 studies were published indicating a global autism prev-
alence that ranges within and across regions, with a median prevalence of
Correspondence
Mayada Elsabbagh, Montreal Neurological
100/10,000 (range: 1.09/10,000 to 436.0/10,000). The median male-to-female ratio
Institute-Hospital, 3801 University Street, was 4.2. The median percentage of autism cases with co-occurring intellectual dis-
Montréal, QC H3A 2B4, Canada. ability was 33.0%. Estimates varied, likely reflecting complex and dynamic inter-
Email: mayada.elsabbagh@mcgill.ca
actions between patterns of community awareness, service capacity, help seeking,
and sociodemographic factors. A limitation of this review is that synthesizing
Funding information
Fonds de Recherche du Québec Santé (FRQS), methodological features precludes a quality appraisal of studies. Our findings
and Canadian Institutes of Health Research reveal an increase in measured autism prevalence globally, reflecting the com-
(CIHR). The funders had no role in study bined effects of multiple factors including the increase in community awareness
design, data collection and analysis, decision to
publish, or preparation of the manuscript. and public health response globally, progress in case identification and definition,
and an increase in community capacity. Hypotheses linking factors that increase
the likelihood of developing autism with variations in prevalence will require
research with large, representative samples and comparable autism diagnostic
criteria and case-finding methods in diverse world regions over time.
Lay Summary
We reviewed studies of the prevalence of autism worldwide, considering the impact
of geographic, ethnic, and socioeconomic factors on prevalence estimates. Approxi-
mately 1/100 children are diagnosed with autism spectrum disorder around the
world. Prevalence estimates increased over time and varied greatly within and
across sociodemographic groups. These findings reflect changes in the definition of
autism and differences in the methodology and contexts of prevalence studies.
KEYWORDS
autism, methodology, prevalence, risk factors, social determinants, time trends
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© 2022 The Authors. Autism Research published by International Society for Autism Research and Wiley Periodicals LLC.
reviewed by JZ. AY independently screened all studies at tools with/without generating a prevalence estimate, (2) if
the title/abstract stage and at the full-text review stage. they focused on other disorders, or when they focused on
Reference lists of relevant reviews were searched manu- estimating ASD prevalence in other conditions, for exam-
ally by JZ to ensure the inclusion of any additional stud- ple, intellectual disability, psychosis, and so forth. Studies
ies. PRISMA flowchart in Figure 1 summarizes the were excluded if full-text articles were not available.
number of articles identified, screened, and included in Studies were also excluded when minimal information
the final review. necessary to establish prevalence (i.e., size of the popula-
tion, age range covered, number of cases with ASD, and
95% confidence intervals [CI] for the estimate) was not
Eligibility criteria reported and could not be ascertained based on published
information about the study.
Studies that were included had as a primary aim to esti- A data extraction form was designed and piloted on a
mate the prevalence of ASD since 2012. Studies were selected number of included studies. For each of the stud-
excluded when (1) their primary aim was to test screening ies included, the following variables were extracted: coun-
try, area, year of the study, size of the population for
which prevalence was ascertained, number of cases with
TABLE 1 Search strategy terms and combinations ASD, the diagnostic criteria used in case ascertainment,
Search Terms age range covered, gender ratio within the affected sam-
ple, prevalence estimate (number per 10,000), 95% CI for
1 Autistic Disorder/ or Autis*.mp. or Autism Spectrum the estimate, proportion of ASD cases classified in the
Disorder/ or Child Development Disorders, Pervasive/
or ASPERGER SYNDROME/ or asperger.mp.
range of intellectual disability (ID), with an IQ < = 70 or
a clinical diagnosis of ID. Data were extracted by JZ,
2 PREVALENCE/ or prevalence.mp. or cross-sectional
studies.mp. or Cross-Sectional Studies/ or genetic AY, and AI. Any discrepancies were discussed and if nec-
screening.mp. or Genetic Testing/ essary, were referred to another fourth independent
3 (2012* or 2013* or 2014* or 2015* or 2016* or 2017* or reviewer (ME) for a final decision.
2018* or 2019* or 2020* or 2021* or 2022*).dt,ez. When different estimates were available within a sin-
4 S1 AND S2 AND S3 gle study, we separated the estimates and reported them
5 Limit S4 to humans
in different rows of the summary tables. This is the case
for estimates reported by country (e.g., in Europe,
Delobel-Ayoub et al., 2019), region (e.g., in China, Sun eligibility, of which 71 were retained for inclusion in the
et al., 2019), years (e.g., in the United States, Christensen review (Figure 1).
et al., 2019 and Taiwan, Lai et al., 2012), birth cohorts or
age groups (e.g., in Australia, May et al., 2020; May
et al., 2017). Prevalence estimates
Median
ability in many world regions but ranged from 0% to
20.9
45.4
70.3
33
33
70% in Europe, Americas, Eastern Mediterranean, and
-
the Western Pacific.
70.3–70.3
36.8–67
Although epidemiological studies have rarely used
0–47.5
0–70.3
Range
24–47
comparable variables to describe clinical presentations,
-
frequently reported variables are age, sex, and to some
Proportion of cases
13.2
28.7
15.1
21.8
and methods used for case finding and definition. These
0
-
1.75
2.85
4.3
4.1
4.7
1.1
4.2
Case definition
2.7–5.3
0.8–5.4
2.2–6.1
1.1–4.3
0.8–6.1
1.15–3
Range
1–1.2
1.66
0.7
1.3
2.1
1.0
1.9
0.1
28.3
23.2
62.6
100
205
100
1.09–436
1.09–436
120–290
7.5–140
24–268
10–153
82.3
63.5
34.0
86.5
30,754
31,000
8143
465–51,529,338
3964–28,070
998–837,655
4,236,842.3
200,737.5
454,113.5
98,253.0
323,890
99
Case finding
TABLE 2
Americas
Europe
Region
Africa
established is the Center for Disease Control (CDC) sur- different stages. Across study types, factors that influence
veillance system implemented through the Autism and prevalence estimates relate to the specific procedures used
Developmental Disabilities Monitoring Network to evaluate cases, resulting in possible cases or confirmed
(Maenner, 2020), which has regularly published updated cases of autism.
prevalence estimates of autism among 8-year-old chil-
dren, and more recently among 4-year-olds, who live in
up to 16 sites. Canada also established the National Case identification and evaluation
Autism Spectrum Disorder Surveillance System and
reported prevalence among 5-17-year-old children across Different studies rely on varying procedures to identify
six provinces and the Yukon territory (Ofner probable cases and to confirm diagnosed cases. Studies
et al., 2018). The system identified children from health using administrative databases report cases as they were
and social services or from educational records, wherein identified in health or educational systems. These studies
diagnosis was made by a licensed health professional. In are limited by variability in clinical practice and high
one province, data were extracted from a broader surveil- potential for inconsistency. For these reasons, the CDC
lance system established for several health conditions; the established a more refined strategy for their surveillance
Quebec Integrated Chronic Disease Surveillance System systems. First, records are screened, and a social trigger
(Diallo et al., 2018). allows the creation of a research record for a given child
In Europe, data from national health registries using multiple linked data sources (health and educa-
allowed estimation of ASD prevalence in France, tional). In the second step (confirmation stage), the
Denmark, Finland, and Iceland (Delobel-Ayoub research record is reviewed by a panel of clinicians to
et al., 2019; Schendel & Thorsteinsson, 2018; van Bakel ascertain defined cases. In case of disagreement, other cli-
et al., 2015). Such registries rely on data available across nicians may arbitrate.
the lifespan through universal health care systems and Population-based studies usually evaluate smaller
are highly representative of local populations. Studies in samples and therefore use a multistage approach to
other countries also used administrative databases avail- screen the target population and then confirm the accu-
able through governmental hospitals (al-Mamari racy of their final caseness. When the screening phase is
et al., 2019), insurance providers (Jariwala-Parikh completed, cases identified as positive and, unless the
et al., 2019), or educational systems (Diallo et al., 2018; screening tool is 100% sensitive, a sample screening nega-
Pinborough-Zimmerman et al., 2012). tive go through the next step involving a more in-depth
Other prevalence estimates were obtained from longi- diagnostic evaluation to confirm their case status, either
tudinal cohort studies, such as the Neurodevelopmental on the full sample or on a randomly selected subsample.
Disorders Epidemiological Research in Spain (Morales- Unless the validity of the screening tool is established in a
Hidalgo et al., 2018), and the Longitudinal Study of given population, samples of children screening negative
Australian Children (May et al., 2017; May et al., 2020; should be evaluated to estimate the sensitivity of the
Randall et al., 2016). National health surveys were also screening procedure and adjust prevalence estimates
used to estimate autism prevalence such as the US accordingly (Alshaban et al., 2019).
National Survey of Children’s Health (Kogan Standard tools frequently used during the screening
et al., 2018) and the US National Health Interview Sur- stage of epidemiological studies include original or trans-
vey (Xu et al., 2019). Finally, population-based epidemi- lated versions of the M-CHAT (Chaaya et al., 2016;
ological surveys relied on a multistage approach: the Hoang et al., 2019), the SCQ (Narzisi et al., 2020; Rudra
screening stage identified possible cases and the final et al., 2017), the CAST (Morales-Hidalgo et al., 2018;
stage determined the proportion of screened cases who Sun et al., 2019), and the Autism Spectrum Rating Scale
have a confirmed diagnosis (Alshaban et al., 2019; (ASRS; Zhou et al., 2020), the Social Responsiveness
Fombonne et al., 2016; Sun et al., 2019). Scale (Constantino & Gruber, 2012; Fombonne
While surveillance systems, registries, and administra- et al., 2016) or the Autism Quotient (Brugha et al., 2016;
tive data offers large sample sizes, prevalence may still be Heys et al., 2018).
underestimated if there are many cases of autism in the When participants are directly examined for diagnos-
community that do not have a diagnosis. These studies tic confirmation, various approaches are used ranging
focus on populations with access to services rather than from an unstructured examination by a clinical expert to
sampling from the population at large, leading to possi- the use of batteries of standardized measures by trained
ble underestimation of prevalence. In contrast, research staff. Standardized diagnostic tools that have
population-based surveys that rely on active case-finding been used to confirm ASD include the ADOS
procedures usually yield higher prevalence estimates than (Fombonne et al., 2016; Sun et al., 2019), ADI-R
studies using administrative data (Fombonne, 2009). (Morales-Hidalgo et al., 2018; Sun et al., 2019) and/or
However, the success of active screening procedures may other assessments used to characterize the heterogenous
be limited by population coverage, sample representative- profiles within the spectrum. Interestingly, the use of such
ness, and response rates from participants during tools is still not a guarantee for accurate case
19393806, 2022, 5, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/aur.2696 by Cochrane Portugal, Wiley Online Library on [24/11/2022]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
784 ZEIDAN ET AL.
ascertainment. As discussed below, the utility of stan- A few studies unfortunately omitted the case confirma-
dardized assessment tools is contingent on the level of tion stage altogether due to limited research or clinical
training and expertise of the people administering them. capacity but acknowledged this as a methodological
Moreover, anecdotal evidence suggests that clinicians in weakness limiting the value of the resulting estimates
some communities may lean towards over-applying a (Chaaya et al., 2016; Chinawa et al., 2016; Mohammadi
diagnostic label for autism because such labels facilitate et al., 2019).
access to services that are otherwise limited. Therefore, available studies highlight an unfortunate
Choices made by different investigators regarding trade-off between methodological rigor versus representa-
which tools to use for diagnosis depend on existing clini- tiveness of samples in epidemiological estimates. The use
cal and/or research capacity in the target community. of standardized tools increases the comparability of find-
Indeed, some epidemiological studies such as those con- ings. In the context of screening, knowledge of the sensi-
ducted in India (Arora et al., 2018; Raina et al., 2017) tivity and specificity of the tools used is useful in
have gone beyond raising awareness among policymakers understanding and interpreting resulting estimates. Simi-
about early identification and have also generated newly larly, the use of standardized tools for diagnostic confir-
validated culturally appropriate screening and/or diag- mation reduces reliance on clinical judgment so that
nostic tools, and supported training for clinical and/or cases identified are comparable within and across studies.
research teams. As the number of these studies increases, However, higher costs associated with the use of stan-
there is also more awareness of the significant barriers dardized tools have made research samples less represen-
simultaneously impacting research and clinical care in tative of the world’s population. This is especially the
under-represented world regions, including the high costs case in low- and middle-income countries where clinical
and high level of specialized autism expertise needed for and research capacity for autism is still developing.
rigorous and standardized methods for case identification
and evaluation (Abubakar et al., 2016; Durkin
et al., 2015; Elsabbagh et al., 2014). Prevalence estimates and etiological factors
For these reasons, epidemiological studies have
responded to the lack of contextually appropriate tools Several hypotheses have emerged linking variations in
using different approaches. One approach that offers prevalence in different populations and the time trends of
comparable estimates across different world regions increasing prevalence to possible differences in underly-
involves translations and/or cross-cultural adaptations of ing etiological factors. Moreover, there is accumulating
screening and diagnostic tools from their original form in evidence in the studies reviewed that the variation in
English to other languages and cultural settings; one such prevalence reflects disparities linked to a broad category
example is the Arabic version of the M-CHAT (Chaaya of social determinants including demographic, racial, and
et al., 2016) or the Arabic version of the SCQ (Aldosari socioeconomic. Evidence pertaining to factors identified
et al., 2019). Other studies have used original validated in the review are discussed next.
screening or diagnostic tools purposefully developed for
cross-cultural use or for a specific country/region, albeit
limiting comparability with other tools used in autism Biological sex
research (Arora et al., 2018; Kakooza-Mwesige
et al., 2014; Raina et al., 2017). Some studies have used Male sex is one of the most well established etiological
unvalidated although useful tools for their context. For factors for autism, giving rise to the notion of a “female
example, a number of studies done in a school setting protective effect,” where females would require greater
used a Teacher Nomination Form, where teachers are etiologic load to manifest the same degree of affectedness
asked to identify possible cases based on nontechnical as males (Elsabbagh, 2020; Lord et al., 2018). This pat-
descriptions of possible signs or symptoms (Narzisi tern is confirmed by reviewed estimates, where males out-
et al., 2020). number females across studies. Paradoxically, the female
Even when valid and reliable tools are used, the sensi- protective effect also implies that when identified as hav-
tivity of the screening methodology is rarely if ever 100% ing autism, females are more likely to exhibit a more
in autism surveys and some true cases that are not identi- severe phenotype. Consistently, most of the studies that
fied. This implies that, in general, available prevalence of reported IQ levels also found a higher proportion of
autism is underestimated relative to true rates. Recent epi- autism cases with ID among girls than boys (Idring
demiological studies in previously under-represented world et al., 2012; Delobel-Ayoub et al., 2019; van Bakel
regions have also been limited by relatively low participa- et al., 2015). Similarly, another set of studies found that
tion rates and poor specificity of the screening tools used males with ASD were overrepresented in the range of
in the context of these studies (Fombonne, 2019). higher IQ (Baio et al., 2018; Brugha et al., 2016). These
In relation to case confirmation, when no standard- findings are consistent with previous observations in the
ized tools were available, investigators confirmed cases US stating that the male-to-female ratio increased as the
based on clinical judgment (Ouellette-Kuntz et al., 2014). severity of ID decreased (Yeargin-Allsopp et al., 2003).
19393806, 2022, 5, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/aur.2696 by Cochrane Portugal, Wiley Online Library on [24/11/2022]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
ZEIDAN ET AL. 785
studies continue to inform the public health response Hidalgo et al., 2018; Van Wijngaarden-Cremers
across the globe. Recent studies are continuing to demon- et al., 2014). Therefore, while male sex can reasonably be
strate the relatively high prevalence and the health and used as a biological indicator, the impact of ascertain-
economic impacts of autism. ment issues on prevalence estimates is unknown.
In response to the need for an up-to-date global esti- The evidence we reviewed also links autism preva-
mate of ASD prevalence, our review revealed a median lence with a range of social determinants, including geog-
prevalence of 65/10,000 as opposed to 62/10,000 in the raphy and race/ethnicity. Other research focusing on the
previous review. In line with previous evidence, recent social determinants of autism has found a positive associ-
studies continue to report an increase in measured preva- ation between SES and autism prevalence, albeit not con-
lence over time either at a country level and/or for spe- sistently. We could not find compelling evidence for
cific subgroups, for example, the United States direct causal associations between any of these factors
(Christensen et al., 2019; Jariwala-Parikh et al., 2019), and variation in autism prevalence. Instead, social deter-
South Korea (Hong et al., 2020), and Taiwan (Lai minants likely interact with biological factors in complex
et al., 2012). Similarly, an increase in measured preva- ways, exerting an influence on prevalence and outcomes
lence has been reported in later birth cohorts in France by modifying patterns of help seeking and access to care.
(van Bakel et al., 2015) and Australia (May et al., 2020; For example, the inconsistency in the association between
May et al., 2017; Randall et al., 2016). SES and autism prevalence may reflect differences in
Our findings also confirm that the substantial vari- availability and affordability of health services in coun-
ability observed in the estimates can be, in part, tries like Sweden (Rai et al., 2012) and France (Delobel-
accounted for by methodological and contextual differ- Ayoub et al., 2015), but not in other countries like the
ences among studies. First, surveillance systems, national United States (Durkin et al., 2017). Similarly, previous
registries, and other administrative databases offer larger evidence from in the United States has consistently rev-
and more representative samples relative to other study ealed racial dipartites, but recent findings suggest that
designs, but they are usually associated with lower sensi- such disparities diminish after stratification by SES
tivity for case finding (Dodds et al., 2009), especially in (Durkin et al., 2017). New findings from India also report
areas with limited availability and/or access to service. In more cases of autism among higher relative to lower SES
contrast, active case-finding procedures in cohort studies groups, albeit without reaching statistical significance
or population-based epidemiological surveys may result (Raina et al., 2017). Paradoxically, prevalence of other
in more rigorous estimates, but their results are often childhood disabilities, including ID, is consistently higher
confounded by multiple factors related to diverging strat- among lower SES groups (Spencer et al., 2015). As such,
egies for case finding, evaluation, and confirmation used findings from autism epidemiology converge with other
across studies. Second, methodological factors also inter- areas of research signaling the need for improved under-
act with the broader community context where the level standing and targeted policies to address health
of awareness and capacity in health and education sys- disparities.
tems significantly impact autism identification, evalua- Similarly, time trends in autism prevalence also reflect
tion, and therefore prevalence estimates. Third, the the combined effects of multiple factors rather than a sin-
evolving nature of the clinical definition of autism and its gle causal pathway. Factors known to account for the
differentiation from overlapping conditions has contin- rise in prevalence include the increase in community
ued to influence prevalence estimates. awareness and public health response globally, changes
Several epidemiological studies identified in our in case definition that have broadened diagnostic bound-
review attempted to use prevalence estimates to infer aries over time, increased diagnosis of milder forms, and
underlying etiological factors. Biological sex has been increase in the identification of autism in previously
considered as a clear contributing factor based on the under-diagnosed populations defined by sex, geography,
consistency in higher male-to-female ratio reported race/ethnicity, or SES. To date, there is weak or con-
across study. Complicating inference about sex as a bio- flicting evidence for the hypothesis that geographic varia-
logical factor are hypotheses about differences in ascer- tion or time trends in prevalence may reflect differences
tainment that may well account for the very wide range in exposure to environmental risk factors (Nevison, 2014)
in ratios (0.8 to 6.1). For example, some studies attrib- or increased patterns of migration (Keen et al., 2010).
uted sex differences to ‘boy-centric’ aspects of diagnosis Key limitations are common to our original 2012 sys-
such as girls having more socially appropriate restricted tematic review are important to acknowledge. The review
interests than boys, or overall higher levels of social skills, protocols were not pre-registered and we did not conduct
or lower IQ (Chaaya et al., 2016; Frazier et al., 2014). an appraisal of methodological quality. Only minimum
Moreover, current assessment practices for autism are criteria were used for including studies in the systematic
not optimized for girls relative to boys (Beggiato review related to completeness of data relevant for the
et al., 2017; Van Wijngaarden-Cremers et al., 2014). In calculation of prevalence estimates. Instead of excluding
particular, some studies have shown that many girls with data based on quality, we opted to report all data com-
a positive ASD screening were false positives (Morales- prehensively and synthesize various methodological
19393806, 2022, 5, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/aur.2696 by Cochrane Portugal, Wiley Online Library on [24/11/2022]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
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