Grinker, Yeargin-Allsopp, and Boyle. Culture and Autism Spectrum Disorders. In Amaral, Geschwind,...

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Autism Spectrumisorders

EDITED BY

David G. Amaral, PhDGeraldine Dawson, PhDDaniel H. Geschwind, MD, PhD

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Autism spedrum disorders I edited by David G. Amaral, Geraldine Dawson,Daniel H. Geschwind.

p.;cm.Includes bibliographical references and index.ISBN (hardcover: alk. paper)1. Autism spectrum disorders. t. Amaral, David, 1950- II. Dawson, Geraldine.III. Geschwind, Daniel H.[DNLM: I. Autistic Disorder. WS 350.6jRC553.A88A874320ll616.85'882-dc22 2010030248

ISBN:

987654321

Printed in the United States ofAmericaon acid-free paper

7 !!JmmOlJOl&l Roy Richard Grinker, Marshalyn Yeargin-Allsopp, Coleen Boyle

Culture and Autism Spectrum Disorders: The Impacton Prevalence and Recognition

Points of Interest

Autism exists throughout the world, even in societiesthat have no name for it.Understanding how culture influences the recognition,definition, and treatment of autism may lead to betterprevalence estimates.Public and private funding agencies now support epide-miological research in low and middle-income countriesto explore how autism varies internationally in termsof its clinical manifestation and the extent of disabilityassociated with the disorder.Autism spectrum disorders and explanations of develop-mental disorders (scientific or otherwise) are productsof the interplay between biological, psychological, andcultural phenomena.Local factors affecting «administrative" prevalenceestimates include poverty, access to services, racial dis-crimination, stigma, cultural beliefs about what kindsofbehavior afe <'normal" and "abnormal," and a nation'shealth and public health infrastructure.

Awareness of the prevalence and phenotypes of autismspectrum disorders (ASD) has increased significantly over thepast decade, especially in North America and the UnitedKingdom. Knowledge about ASD has also begun to spreadinternationally to countries such as India, South Korea, andKenya, where the fields of developmental psychology, devel-opmental pediatrics, and child psychiatry are less robust andwhere clinicians and educators do not generally distinguishASD from other neurodevelopmental disorders, such as intel-lectual disability or learning disorders.A search of published ASD research activities across the

globe, however, might suggest that there is little knowledgeabout ASD outside of North America and Western Europe.Indeed, there are insufficient data to estimate the prevalence of

autism in the Caribbean, Central and South America, EasternEurope, the Middle East, South and Southeast Asia, and theentire continent ofAfrica (see Table 7-1; Figures 7-1 and 7-2).Mapping the prevalence of autism, as seen in Figure 7-2, canbe misleading, as it does not reflect the history of autismresearch or the recent growth around the world in awarenessand expertise. For example, Hans Asperger, whose studies ofASD were foundational to the field today and whose descrip-tions are, for the most part, still relevant today, was Austrian.Leo Kanner, the psychiatrist who first described autism, wasAustrian-American and was deeply influenced by an Italianscientist, de Sanctis, who in 1906 published case reports onearly onset "dementia praecox" (probably autism) in a groupof children with intellectual disability.In addition, despite the absence of international epidemio-

logical studies, awareness, advocacy, and opportunities fortreatment and education of children and adults with ASD areadvancing rapidly throughout the world. Today, nationalautism societies exist in more than 100 different countries, andscientific research on ASD is underway in eastern and south-ern Africa, India, several Middle Eastern countries, Mexico,Venezuela, and a host of other nations.For a number of reasons, continued growth of interna-

tional research on ASDs, and neurodevelopmental disordersin general, should be expected. First, the number of childmental health professionals in non-Western countries is rising.Second, recent large-scale collaborations beh'leen UNICEF,WHO, the World Bank, and university-based scientists, haveled to improved recognition ofdevelopmental and intellectualdisabilities among children living in poverty in the developingworld, as evidenced by a high-profile series ofarticles on childdevelopment in The Lancet in 2007. In war-torn countries,some United Nations peacekeepers are now trained to provideservices to individuals with autism.Third, as low and middle-income countries advance

economically, and infectious diseases and child mortality

iI,'I

FOITlhonne et

Icasiano etal.,2004

Hondaet al,,2005

Reference

Bairdet al.,2006

Gillbcrg etal., 2006Kiclinen etat, 2000

Lauritsen et al.,2004- Magnusson.& Saemundsen. 2001

-oo"v,vvv= 11154Insufficient Data

Insufficient Data

Insufficient Data

Prevalence

-116110,000 = 1/86

-53110,000 = 1/188

-12110,000 = 1/833-12/10,000 = 1/833-13/10,000 = 1/769Insufficient Data

Insufficient Data

Insufficient Data

Insufficient Data

Insufficient Data

-89/10,000 = 1/112Insufficient Data

Insufficient Data

Insufficient Data

-39/10,000 = 1/256Insufficient Data

Country

Canada

Dominican Republic, Aruba, other

Mexico, Costa Rica, Panama, other

Venezuela, Brazil, Chile, other

France, Spain, Italy, Greece, other

Russia, Poland, others

Israel, Qatar, Saudi Arabia, other

All regions

India, Bangladesh, others

]apallChina

Korea

Taiwan, Singapore, Thailand, other

Culture and Autism Spectrum Disorders: The Impact onPrevalence and Recognition 113

New Zealand

•

b""rn,p",bl, ''''''' 'it"d" to differences in study design, case ascertainment techniques, and among sample populations.

7-1.prevalence around the world (2000-2009)

7-1. Map ofautism societies around the world as of200a (Map courtesy ofTamara Daley),

South,-",ntraIAsia

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114 Autism Spectrum Disorders

Figure 7-2. Map ofautism prevalence studies around the world (2000-2008).

become less of a concern, disability and child developmentbecome more prominent as public health issues.Nonetheless, researchers are just beginning to study the

extent to which ASD varies across cultures. Although mostresearchers expect that the onset and core symptoms ofASDare consistent across cultures, this remains an assumption.ASD experts to date know little about how genetic heterogene-ity and cultural differences interact to influence the kind andrange of impairments that are essential to or associated withASD, its prevalence, course, or familial patterns.The most robust body of literature on autism as a global

phenomenon is in the field of psychiatric epidemiology. Overthe past 40 years, prevalence studies of autism have been con-ducted in numerous countries. with one major review citingEnglish-language studies in 13 different countries, includingFrance, Japan, Nonvay, Iceland. and Finland (Fombonne.2003, 2009). Epidemiological findings are forthcoming fromEast Asia and South America (Montiel-Nava & Pena, 2008)and ASD screening tools have been tested in a wide range oflocations (see, for example, Lung et al., 2010 on Taiwan, andEldin et al.. 2008 on the Middle East). However, the vastmajority of prevalence studies have been conducted in theUnited Kingdom and North America.

A few case reports and screenings have been published forother countries, such as Malaysia (Kasmini & Zasmani, 1995),Taiwan (Chang et aI., 2003), Zimbabwe (Khan & Hombarnme,1996), and the United Arab Emirates (Sartawi, 1999), withsome studies reporting associated medical conditions such asmitochondrial respiratory chain disorders in Portugal (Oliveiraet aI., 2007) and Mobius sequence in Brazil (Bandim et aI.,2002). Research on possible clusters of autism amongpeans and Americans of Somali origin is in the beginningstages (Barnevik-Olsson, Gillberg, & Fernell, 2008; MinnesotaDepartment of Public Health, 2009). Some studies, such as LaMalfa's epidemiological work in Italy, have examined the prev-alence of pervasive developmental disorders (PDD) in analready identified pool of children with intellectual disabilities(La lvIalfa et aI., 2004). Others examine ASD as one of a groupof conditions in large-scale projects on challenging childhoodbehaviors or developmental disorders in general (Holden &GitIeson, 2006; Morton et al., 2002). At least one British studynoted significantly higher prevalence of childhood cognitivedisabilities, including autism, among citizens of Pakistaniorigin, whose high rate ofconsanguineal marriage is believed tobe related to a rate ofbirth defects that is higher than the gen-era! population in the United Kingdom (Morton et aI., 2002).

Recognition and Epidemiology

Culture and Autism Spectrum Disorders: The Impact on Prevalence and Recognition 115

between British and American psychiatrists (whose scientificcultures are not dramatically different), R E. Kendell (1971)and his colleagues showed a video of a socially awkvvard man,described as a 30-year-old bachelor, and asked British andAmerican psychiatrists to give a diagnosis based only onthe video. Sixty-nine percent of the American psychiatristsdiagnosed the man with schizophrenia; only 2% of Britishpsychiatrists gave that diagnosis (a large number of the Britishclinicians gave a diagnosis of manic-depressive illness). Shiftsin classification occur for many reasons-such as the needto screen and treat soldiers in military conflicts, shifts in theway the insurance industry conceptualizes appropriate reim-bursements, and public attitudes about the stigma of mentalillness-that have little to do with advances in science andmuch to do with social and historical context (Grinker, 201Oa).The classifications of the most empirically verifiable disorders,such as bacterial 'or viral infections, evolve and are formed by

A disorder, even one with a clear cause or biomar-ker, is only a disorder when a society construes it as such.Thus, although Asperger's disorder is scheduled for elimina-tion from the proposed DSM-5, this does not mean thatAsperger's once existed as a real disease and now has disap-peared. Asperger's was useful when a non-stigmatizing termwas needed for people with the disorder, but clinicians nowquestion it for both cultural and scientific reasons. From theperspective of culture, Asperger's is fast becoming obsolete asa scientific category as the stigma of autism declines. Societiesthroughout the world are beginning to appreciate the strengthsand capabilities ofpeople with autism, and people with autismincreasingly feel less self-stigma and may advocate for theirneeds in public forums. From the perspective of science, clini-cians recognize that almost everyone with Asperger's also fitsthe profile of the more classic autistic disorder. Indeed, in thecurrent diagnostic manual, the DSM-IV, a child who has goodlanguage acquisition and intelligence qualifies as autistic if, inaddition to having restricted interests and problems withsocial interactions, he has just one of the following symptoms,which are common among children with Asperge!"'s: difficultyconversing, an inability to engage in make-believe play orrepetitive or unusual use of language. Even the best availablediagnostic instruments, such as the ADOS and ADI-R, cannotclearly identify distinct subtypes on the autism spectrum(Grinker,20IOb).The social construction of psychiatric classification can be

illustrated by the differences between ASD diagnostic classifi-cation and research in the United States and France. In theUnited States, the American Psychiatric Association removedautism from the category of "psychosis" in 1980, but theFrench child psychiatric establishment, which uses its ownindigenous manual of mental disorders, the ClassificationFranr;:aise des Troubles jVJentaux de I'Enfant et de I'Adoiescent(CFTMEA), classified autism as a psychosis until November2004. French health professionals also conceptualize theetiology of autism in a manner that is different from otherEuropean countries and consider the American classifica-tion of PDDs to be a product of Anglo-American culture.

DSMcriteria for ASD have been tested in multiple countries,and genetic research involves samples from populationsthroughout 'Western Europe. However, with the exception ofLotter's brief, anecdotal survey of autism prevalence in shAfrican countries (1978) and Probst's exploratory survey ofthe stresses and demands ofparents ofchildren with autism inBrazil, Germany, Greece, and Italy (I998), there are, to ourknowledge, no published cross-national studies that addressthe impact ofculture on ASD. There is also very little informa-tion about how the genetics, biology, risk factors, treatment,and course of ASD differ across continents, countries, orethnic groups. This chapter focuses on the international prev-alence and diagnosis of autism because these are the areasin which international scientific publications exist. We con-sider the effect of culture on the conceptualization and identi-fication of ASD, with special attention to the question ofhow studies of the sociocultural contexts of ASD, andneuropsychiatric disorders in general, can help us frame futureinternational ASD research.Given the fact that the majority of research on ASD has

been carried out within the mental health field, we situate theresearch within the larger framework of psychiatric and psy-chological studies. However, we recognize that as research onASD progresses, a greater number ofstudies will consider ASDfrom alternative, nonpsychiatric perspectives, such as withinthe context of a neurodevelopmental disorders framework.

Research to date has highlighted cross-national differencesin the symptoms and course of psychiatric disorders. Forexample, although the age of onset and prevalence of bothschizophrenia and obsessive-compulsive disorder are remark-ably consistent across the globe, sex ratios, comorbid condi-tions) symptom expression, severity, and prognosis varysignificantly (Hopper et aI., 2007; Horwath & vVeissman,2000; Leme1son, 2003). Moreover, although researchers mayuse standardized assessments and criteria (at the very least,DSM and ICD criteria) to determine whether an individualconstitutes a "case" of autism, clinicians who are not inte-grated into a research community-physicians and psycholo-gists who see patients in private or clinic settings-mayconform to folk categories of illness or rely on past trainingand personal clinical experience. Even with standardized cri-teria, considerable subjectivity and differences in clinicalassessments exist, since the diagnosis depends on patient orcaretaker narrative and behavioral observation rather thanlaboratory tests. Indeed, variations in diagnosis within andbenveen societies can sometimes be explained in terms of thedifferences between research and clinical practice.Cross-cultural variations in psychiatric diagnoses can be

found, even between communities whose scientific traditionsare often assumed to be similar, such as the United States andthe United Kingdom. In a landmark study of the differences

cd forL995),rume,withlCh as

et al.,Euro-inningilesota: as La: prev-in anbilitiesgroupdhood,jen &studymitivekistani"led toe gen-:002).


Since French health professionals generally view autism as aproblem that lies within family social relationships and withthe relationship in particular, there are only afew psychiatric or medical centers with expertise on autism asa genetic or brain disorder.In recent years, a battle has erupted between French parents,

armed with scientific studies and classifications from theUnited States and the United Kingdom, and French childpsychiatrists. French health professionals generally retain amore 'restricted concept of autism and are openly hostile tobehavioral interventions, such as the Treatment and Educa-tion of Autistic and Related Communication-HandicappedChildren (TEACCH) program or Applied Behavioral Analysis,and to parent and parent association efforts to shift the locusof autism treatment from the hospital to the school (Chamak,2008). Despite the efforts of parents, autism research andtreatment in France continues to be guided largely by psycho-analytic thought, in particular the idea that autism is a disor-der of object relations. Research on treatment emphasizes playtherapy and interactive techniques to facilitate the growth ofautonomy and a sense of self.A clinical trial is undenvay in Lille, France. on the contro-

versial therapy called "packing," in which a child is wrappedtightly in wet, refrigerated sheets. for approximately sixty min-utes while clinicians attempt to talk with them about theirfeelings. The therapy is based on an argument that a child'sability to establish a proper relationship between his internalworld and his external, social reality depends on his ability tomerge his body and his body image (Spinney, 2007).One reason for the absence of a large number of cross-

national studies in mental health is that, in addition tobeing expensive and difficult to coordinate, the standardizedassessments and classifications needed for such studies are ofsomewhat recent origin. American psychiatrists and psychol-ogists have become keenly interested in diagnostic classifica-tion only in the last 3 decades. As one result, psychiatricepidemiological studies using comparable methods did notbegin in earnest until the 1970s, and there were few cross-national studies conducted until the 1990s. The World HealthOrganization (WHO) international studies of schizophreniabegan in 1968 and eventually included thirty research sites innineteen countries and involved a 26-year follow-up period.These studies represent the most ambitious and lengthy cross-cultural explorations of the manifestations, course, and out-comes of a mental illness. Yet, as recently as 2004, only twoprevalence studies ofmental disorders amongEuropean adultshad used comparable methods of ascertainment at the sametime in more than one conntry (ESEMeD/MHEDEA, 2004).However, if we accept Cohen and Volkmar's assertion aboutautism, in relation to the DSM-IV and ICD-9 criteria that"There is no other developmental or psychiatric disorder ofchildren (or perhaps ofany age) ror which suchwell-groundedand internationally accepted diagnostic criteria exist," cross-national stndies should be feasible (Cohen & Volkmar, 1997).Although there is a rapidly growing literature on interna-

tional studies of neurodeve1opmental disorders, and ASD in

particular, there are few estimates of the prevalence ofphysical disabilities among children in low and middle-income countries and even fewer of behavioral disorders(Yeargin-Allsopp & Boyle, 2002). Researchers have made sig-nificant progress internationally, studying some disorders inchildhood that have a neurodevelopmental component, suchas cerebral palsy and epilepsy. Among psychiatric disorders,ADHD and conduct disorder have been studied extensivelyacross the globe (Faraone et aI., 2003; Polanczyk et aI., 2007).However, epidemiological research on childhood onset dis-orders lags behind the epidemiology of such disorders inadults. Even within the area of the epidemiology of childmental disorders, more is known about psychiatric disordersin older children and adolescents than in younger children.One area of progress in the diagnosis and epidemiology of

autism across cultures has been at the level of screening, inparticqlar the development of brief screening tools that canbe validated in numerous languages and dialects and admin-istered with minimal training. For example, the ChildhoodAutism Rating Scale (CARS) (Schopleret al., 1988), a IS-item,behavioral rating scale has been shown to be both sensitiveand specific for ASD; the Autism Behavior Checklist (ABC)(Krug et aI., 1980) includes 57 items but nonetheless takesless than 20 minutes to complete; and the Autism SpectrumScreening Questionnaire (ASSQ) (Ehlers et aI., 1999), a10-minute, 25-item rating scale appears to be particularlygood at screening for high-functioning autism and Asperger'sdisorder. These scales have been used successfully in interna-tional research, have proved both reliable and specific, and arethus valuable in clinical and community-based settings. Abroader approach, especially applicable in low and middle-income countries, is to screen children initially for an array ofneurodevelopmental disabilities and then administer a condi-tion-specific assessment for children who screen positive.This model was initially developed by Durkin et a1. (1992)using a short questionnaire that includes only ten questions(known as the "ten questions screen"). More recently, the tenquestions screen has been adapted by Indian researchers aspart of the International Clinical Epidemiology Nenvork(INCLEN) in India for a community-based screening studyofautism and other developmental disorders among childrenages 2-9 years.In research settings in which scientists trained in the

diagnosis of developmental disabilities are available, screen-ings are useful as a first -stage diagnostic tool. More lengthyand substantial diagnostic assessments are then performedwith tools such as theAutism Diagnostic Observation Schedule(ADOS) (Lord et aI., 1999) and the Autism DiagnosticInterview (ADI) (Rutter et aI., 2003), both ofwhich have beentranslated, validated, and are available for purchase in twelveEuropean languages and Korean. Numerous other translationsare undenvay, but more are needed. As one researcher inThailand noted (where no translations ofthese tools have beenvalidated), even when researchers and clinicians can charac·terize ASD as conforming to DSM-IV criteria, they cannotconfirm the diagnoses in the absence of Thai-translated,


e ofIdle-

sig-:ts insuchders,,ivelyJ07).. dis-rs inchildrdersreno,gyof19, int canmin-hooditem,sitive\BC)takestrum9), ailadyrger'serna-ldaregs. Addle-rayafondi-5itive.1992)stiansle teno:':rs as

studyildren

n thecreen-,ngthy)fmed,edule:nosticc beentwelve.ationsher inebeenbarac-:annotslated,

stand,ardized investigator-based instruments and structuredohser,atJlonaJ schedules (Chuthapisith et aI., 2007).

Prevalence StudiesInternational Settings

the United States and United Kingdom, investigators nowuse a nyo-stage approach to estimate autism preva-and this approach is capable of detecting more casesever before. In general, the approach involves a screeningto identify a pool of children who may have an ASD,

follo",edbya diagnostic confirmation stage. The methods forphases varywidely, and their validity is dependent on theand educational infrastructure in the country or set-

The screening stage can range from a general populationa primary care setting, as done byHonda et a1. (2005),

a screening of children identified in high-risk settings, sucheducation schools. High-risk screening can be based

canvassing records in schools or health care settings thatchildren with developmental delays or administering anscreening instrument to a knowledgeable informant,

as a parent, guardian or teacher, or a combination ofhyo.

The targeted approach to case screening has become easiermany countries in recent years due to better awareness of

and, presumably, a combination ofmore accurate clin-diagnosis and critical policy level changes that promote

id<mtiificati,on. For example, in the United States, beginning in1991-1992 school year, autism became a separate area of

"eJccepti,om,lity," meaning that children with autism couldspecial education services specifically designated for

chiJdr'en with autism. The U.S. Department of Education'fe<juired schools to report, as part of an annual "child count/'

number of children receiving these services under theclassification. The child count made it significantlyto locate potential case children from school records. Toeven more cases, the CDC studies examined records of

childJ,en with educational classifications beyond autism, suchbehavior disorders and intellectual disabilities, since all

chiildr'en with autism are not necessarily classified by schoolsautistic. In low and middle-income countries, a records-screening approach may not be feasible, because of theof records or because the diagnosis of autism is either

U11lknow'n or rarely used. In such situations, researchers willto screen individuals rather than records.

In the best of circumstances, a researcher can combine arecord review with individual screening. During the individ-ual screening, parents and teachers fill out standardizedthird-party questionnaires such as the Autism ScreeningQuestionnaire (ASQ) or the Autism Spectrum SyndromeScreening Questionnaire (ASSQ). These questionnaires,which have been studied extensively for their reliability-Le.,to make sure that independent researchers using them withthe same case would come to the same conclusion-help

epidemiologists identify potential cases, especially when twoor more instruments with different sensitivities are usedtogether. However, in some countries, it may be impracticalto use parent self-administered screening tools for a varietyof reasons. For example, many parents in low and middleincome countries may have low literacy, especially mothers(since women often have more limited access to educationthen men), and may thus be unable to complete the surveys.Also l for political reasons, parents in some countries may beafraid of having their child's health condition codified inwriting.In the second stage-diagnostic confirmation-epidemi-

ologists ideally use trained diagnosticians to confirm casestatus among those who screen positive. If the screening phasewas based on a record review, a standardized review process isestablished to determine case status (for examples, seeBarbaresi et aI., 2005; Honda et aI., 2005; Williams et aL 2005;Powell et at 2000; Lauritsen et aI., 2004; and Autism andDevelopmental Disabilities Monitoring Network [ADDMJ,2009). Because the study population is much smaller at theconfirmation stagel assessments can be done in person witheach child, preferably with more than one structured, reliablediagnostic assessment, such as the combination of the ADOS(a synchronic observation schedule over one 2- to 3-hourperiod of time) and the ADI (an extended parent/guardianinterview that provides a detailed history, or diachronic per-spective, on the child). Ideally, for both methods (record-based and in-person assessments) the confirmatory diagnosesare then validated by outside consultants using a group ofran-domly selected cases (some with and some without an autismdiagnosis). This second stage is especially important for vali-dating the less clear-cut cases, such as the ones on the borderbetween two different diagnoses or between a diagnosis andnone at all.We have entered a period in history in which autism

awareness is at an all-time high and in which the diagnosis ofautism has broadened to include a range of different peoplealong a wide spectrum. This is largely due to the current use ofthe hvo-stage case-finding approach, which yields many morecases of autism than the older studies. In addition, researchersideally employ quality control measures, such as blindedreviewers, to establish interrater reliability. However, it mustbe stressed that it is exceedingly difficult and expensive to usesuch thorough and rigorous methods. Implementation of thegold standard assessments for autism is particularly challengingin low-income countries. Extensive training is necessary toobtain test reliability. Considerable participant burden isassociated with the length of time, often several hours, toadminister the assessments. Furthermore, in countries inwhich little research has been conducted on child develop-ment, the validity of results from such protocols will be ham-pered by the absence of established, documented norms ofchild development for a given population. Epidemiologicalstudies in the low and middle-income country setting willtherefore benefit from the development of more efficient andaffordable diagnostic assessments.


Challenges to ASD Surveillance

The epidemiology ofASD should be understood in the contextof the many challenges.inherent in applying diagnostic criteriato growing and developing children in different culturalcontexts. It is not feasible to produce a list of criteria for a dis-ability that will be relevant at all levels, andwhat counts as normal or abnormal development will varyfrom culture to culture. There is the obvious problem thatresearchers who study school-age children face the difficulttask of reliably defining cases on the basis of information pre-sented in teacher reports (which can be heavily influenced bya multitude of factors, such as class size, teacher training, andthe local, cultural attitudes toward discipline and about whatkinds of behaviors are age appropriate) and parent reports(which are influenced by the particularities of the parent whocompletes the report). For some childhood onset psychiatricdisorders, estimates may appear higher in a country with greatawareness among parents, educators, and clinicians; access toservices; or in which the national government mandates theuse of "autism" as a diagnostic term. In contrast, estimatesmay be lower in a country with little awareness, few services,and lack of research studies, especially of administrative prev-alence. For example, school and clinic records of «autism" and"traumatic brain injury" grew tremendously following the

school year, when the U.S. Department ofEducation first introduced these terms to the American publicschool system (Newschaffer et aI., 2005).Previous studies confirm significant variations among

locations, even within the same country, as the Centers forDisease Control and Prevention showed from their multisitesurveillance nehvork. Recent prevalence estimates for Arizonaand Missouri (12.1 per 1000) were higher than those fromFlorida (ADDM, 2009). Research in Australia has demonstratedconsiderable variability in diagnostic rates across states andbetv,reen state and national records. In Queensland, the numberof diagnoses of ASD exceeds that of other states, sinceQueensland requires a DSM-IV diagnosis for eligibility for serv-ices but other Australian states do not (Skellern et aI., 2005).Moreover, clinicians will not make or- record a particular

diagnosis, and parents will not seek it, unless the diagnosticterm is meaningful and in current use. Thus, for example, theNavajo Indians of the American Southwest tend to classifyautism as «perpetual childhood" (Conners & Donnellan,1995), and throughout most of India, clinicians caU autismpaagol, the Hindi word for "madness" (Daley, 2002, 2003).School and clinic records for a child with ASD, if there are anyrecords kept, will not list the word "autism." In rural SouthKorea, the catch-all «brain disorder" can be used for childrenwith disorders including traumatic brain injury, autism,epilepsy, speech and language disorders, Down syndrome,and other clearly genetic disorders. In this setting, recordreviews will yield few cases ofautism.Researchers should expect to encounter additional obsta-

cles when attempting to do public health screening inEenera1and ascertain and classify neurodevelopmental disorders in

societies with low access to services. Illness categories arebeneficial only if there is something one can do with them.Thus, for manyAmerican adults with ASD who require publicassistance, it makes little sense to carry an autism diagnosis instates where services for adults with autism are provided onlyunder the category of intellectual disability, or formerly"mental retardation." In urban India, where there are fewautism-related services, a clinician is unlikely to give a diag-nosis of autism since the clinician may believe that it wouldonly confuse the family, the school system, and potential serv-ice providers (Daley & Sigman, 2002; Daley, 2003). Indianpediatricians interviewed by Daley (2003) and Grinker (2007)use a much more well-known retardation,popularly glossed as ifit is sometimes inac-curate, and they will justify it by arguing that the treatmentsand educational services in India for someone with mentalretardation are identical to those for someone with autism.For this reason, records-based approaches to the epidemiol-ogy of autism in societies where «autism» is uncommonlyused as a diagnostic term are not feasible. Even in societieswhere the concept of autism does exist, people may not seekcare from the experts who are familiar with the term. Indeed,epidemiologists should not assume that the population beingstudied shares the researchers' understanding about the rela-tionship between the symptoms being studied and the nameof the disease. In Korea, for example, despite dramatic changesin autism awareness, the word for autism (chap'ae) has quitenegative connotations because many people mistakenlybelieve that all individuals with the diagnosis are profoundlyintellectually disabled and nonverbal. The Korean researchteam in the first author's prevalence study of ASD workedhard to explain to teachers and parents the concept of anautism spectrum (Grinker, 2007). Toward this goal, research-ers asked the child psychiatrists who led the informationsessions at the "mainstream" elementary schools to removefrom their presentations a film about autism because itdepicted a quite impaired young man with autistic disorder.Furthermore, in some developing countries there may be

opposition to research on disorders that are not life threaten-ing. It has been suggested that research on developmentaldisabilities in general is a low priority in many low-incomecountries where there are more pressing issues such as diseasesthat cause infant and child mortality (Durkin, 2002, p. 206).Consequently, in many countries, due to the lack of adminis-trative records on child health) researchers need to be referredto potential cases by awide range ofindividuals, such as priestsand ministers, pediatricians) community leaders, and teachers.Researchers may need to conduct door-to-door householdsurveys and individual screenings of all children in a commu-nity (see, for example, Islam et aI., 1993; Thorburn et aI., 1992;Durkin, Hasan, & Hasan, 1998). Even then, parents and healthofficials may strongly oppose the introduction of a diagnosticcategory that is new and thus confusing.Social stigma influences diagnosis. In South Korea,

dren that American clinicians might diagnose with autism areoften diagnosed with reactive attachment disorder (RAD),


:s arethem,mblic)sis inI onlymerlye fewdiag-",auldI serv-ndian2007)ation,; inac-ffientsnentalutism.::miol-manlydeties)t seek::ideed,beinge rela-name1anges") quiteakenly)undly'searchlarkedof an,earch-l1ation'emovelUse it)rder.'nay be-eaten-:nental:ncomeiiseases). 206).:rninis-"eferred, priests?achers..lseholdommu-I., 1992;, health:gnostic

;:1, chil-tismare,RAD),

pejo,"ltivety referred to as "lack of love" (aejong kyo/pip), athat parallels the older American concept of the "refrig-mother." In Korea, RAD is thought to be a condition

jl1,imicking autism, caused by a mother's absence of attach-to her child (Shin et a1., 1999). Many parents prefer adiagnosis to autism.

First. unlike autism. RAD or lack oflove can be amelioratedand thus is not a permanent condition. Koreans

consider autism to be un treatable (Grinker. 2007).RAD, unlike autism, is not a genetic condition. Thus.

RADmay stigmatize the mother. autism would stigma-the whole family-past, present. and future. This fear ofas a genetic disorder is found in many other countries

well. where parents fear that a child's diagnosis of autismmarginalize the family from the social networks to whichfeel they are entitled, and harm other family members'

prospects (such as the autistic child's siblings).and perhaps most importantly, the diagnosis makesKorea has been undergoing dramatic social change for

last 50 years, emerging from the total devastation of theWar to becoming the twelfth largest economy in theahead of countries like Australia. Switzerland. andNc,tirlg thein,:rease, in workingmothers and nuclear)

opposed to extended. households, Korean sociologists andhealth experts argue that children left with nannies or

daycare cannot form appropriate or lasting attachmentstheir mothers) and that the failure of attachment leads

RAD.Such attitudes are not unique to Korea. Hypotheses aboutcausative role of environmental factors. such as poor

l'arenltirlg and social stressors, in ASD. attachment disorders,other childhood onset problems, have considerable

in impoverished or rapidly changing societies. InAfrica. for example, child psychiatrists argue that the

of such stressors have been grossly underrepresented indevelopment: young children are exposed to

11 ofviolence, parental substance abuse is common,many children are orphaned or raised by multiple

car,eta!cersand with little continuity of care (Hugo et aI., 2003).Despite such obstacles at the clinical level, improvementsdiagnostic specification with screening tools and "gold

,t,nclani" assessments have opened the possibility for rigor-and comparable studies ofASD across cultures. Regardless

of1fih"th,er a society has a word for autism or maintains thatis a rare condition, epidemiologists can ascertain cases.

Children with ASD in a range of different countries have beenidentifi"din prevalence studies and can thus form cohorts for

of etiology and intervention (Vogel & Holford, 1999).more diagnoses are made and recorded in school andrecords. there will be greater opportunities for records-epidemiological studies. In addition. advances in disa-

bUlity lel;islation and the growth of advocacy organizations innumtler of countries. such as Brazil. China. India, Malawi,

Africa, and Uganda (Braddock & Parish, 2001) as welltransnational level (for example, the United Nations,

(iC11NICEF,PAHO, WHO, and the World Bank) have made it

possible for children with autism to obtain appropriateeducational placements and have their diagnoses recorded inschool records. As just one example. the well-known TEACCHprogram has been studied and subsequently adopted in numer-ous countries and is currently under development in China,India, Mexico, Morocco. Nigeria, and the Philippines, amongother places,Despite the progress in the epidemiology ofASD, there are

only a handful of studies that examined the incidence ofautism: the rate of occurrence of new cases in a populationover a specified period of time (Fombonne, 2007; Rothman andGreenland) 1998; Kleinbaumetal.) 1982). This absence is under-standable due to the fact that the emergence of ASD in earlychildhood is insidious. and it is thus often difficult to determinedisease onset. which is necessary to examine incidence. Of thestudies that have- examined incidence) the date of first diagno-sis is usually used as a proxy for onset ofthe disorder. Incidencestudies are particularly challenging in a low or middle-incomecountry setting where autism is not routinely diagnosed andsymptom onset is not well documented (Figure 7-3).Despite all of these challenges, there are ongoing efforts to

facilitate and standardize the epidemiologic approach toautism research from an international perspective. However,.the approaches to autism epidemiology have to be based onlocal capacity and other attributes in a country. A large-scaleinitiative sponsored by the parent advocacy organizationAutism Speaks distinguishes three separate approaches: oneexclusively using records for those settings where most chil-dren with an ASD can be identified in schools and health caresettings; another utilizing disease registry systems establishedin some countries as a mechanism to track the health of thepopulation; and a third approach, for those countries with anundeveloped service system) which requires community can-vassing or more generalized screening. The intent is to facilitateresearch within each of these settings and to explore howautism varies in terms of its clinical manifestation and theextent of disability associated with the disorder.

Effect of Social Organization, Culture, andlanguage on Prevalence Studies and Services

Social Organization and Culture

The 'WHO studies ofschizophrenia constituted the first large-scale effort to explore the role of social organization and cul-ture in influencing the prevalence and outcomes of a mentalillness. However. the concept of «culture/' broadly defined asthe system of meanings through which people organize andmake sense of their lives. has long been a central feature ofpsychiatric description and should not be used only in refer-ence to non-Western societies. For example, researchers haveconsidered how poverty, occupation, social class. and mar-riage systems affect mental illness in the United States.Epidemiological studies ofschizophrenia as early as the 1930s(Faris & Dunham, 1939) noted differences in the prevalenceofschizophrenia in urban and rural areas in the United States.


>'lfuIwa at! 1l'I. 1\" tmrl; 'fffl >R"IT W'!:;;m

f.:m<'l Sf'! """ 4 <'i'T-'f'I

:fl'*m:ilwrltl

<tJ<i'i't '" 1WI'1:&-l1

Figure 7-3. Hindi poster. Autism experts in India are promoting autism awareness through educational programs and posters, such asthis one, in Hindi, that depict and describe a range ofsymptoms. For example, the poster describes the symptom at the top left as "Aloof inManner"; the caption at the bottom right is "Unusual behavior ofbody movement such as flapping hands, rocking, or jumping." Courtesy ofMerry Barua, Action for Autism (India).

Numerous studies highlight racial disparities in the diagnosisof schizophrenia (Mishler) 1965j Ruiz) 1982), with mostresearchers agreeing that the disparities are the result not oftrue differences in prevalence but rather racism) cultural mis-understandings) misdiagnosis, and mismanagement (Whaley)2001). Among the mentally ill, poor people are also overrep-resented) perhaps a legacy to the day when insane asylumsalso served as poorhouses.As recently as 1984, Sanua, echoing Lotter (1978» argued

that autism was not a universal phenomenon, but a culture-bound disorder) Han illness of Western Civilization)}

(Sanua, 1984). And for decades following Kanner's originaldescription of the parents of children with autistic disorder ashighly educated, upper-middle-class workers) researchersfocused on social class as a possible risk factor for autism) oneresult of which was the concept of the refrigerator mother(usually the educated, working, professional mother). Eventoday, some scientists continue to argue that ASD occursmore often in the offspring ofscientists, engineers)ticians, and computer experts, and those with acal perspective have hypothesized that the increase in theprevalence of higher-functioning autism and AspergerJs


-'in"5yof

.dlSOron in the United States and the United Kingdom is theof intermarriage between highly educated parents

iR,,,oln-(;oh,en, 2004), The development of computer tech-nologIes, they argue, makes it possible for autistic adults to

employment, marry, and reproduce. The delay ina suitable mate may lead to an increase in parental

which has been shown in some studies, but not all, to berisk factor for ASD (Durkin et at, 2008; Croen et al., 2007;

et al., 2010; Grether et al., 2009). .hypothesis of an association between autism and high

socio,econolnic status (SES) stands in stark contrast to thebody of research consistently showing that low socioeco-status is the strongest predictor of childhood disabili-

(Durkin, 2002). It is important to point out that none ofclaims associating autism or changing prevalence rates to

cornptlter technology or to higher SES has been proven. Oneiesearch Itealm(Cuccaro et al., 1996) did find that school-basedclinicia!'", pediatricians, and psychiatrists were biased in favorof ',ivin. autism diagnoses to children of parents of high SES.

of pediatricians, Stone (1987) found that a major-itybelie\Ied there was a true association between autism and

It is possible that such a bias explains, at least in part, thethat African American children subsequently diagnosedauu,," are at least 2.5 times less likely to receive a diagno-their first specialty visit than a white child with autism

al., 2002). 'With respect to diagnosis, Bearman and(Liu, King and Bearman 2009; Fountain, King, and2010) correlate lower age of diagnosis and increased

UCliiagn(lSis with higher socio-economic status, and social net-]C ","-,-- All ofthese studies indicate that cultural attitudes about

Sf'; inti,"ellce diagnostic practice, but SES does not appear toAeJtennirlewhether or not someone actually has autism.Neverth"less, poverty, racial discrimination, and margin-

have real effects on outcomes among children withillnesses and disabilities (Brown & Rogers, 2003).

have paid special attention to the differences in:,'I and course of mental illnesses between rural and

environments. Rutter's comparison of the prevalence ofrisvcllial'rkdisorders among 10-year-olds showed significantly

prevalence of disorders (25.40/0) in London than in the(12%). Rutter et a!. (1975) concluded that higher

family conflicts, parental psychopathology, and pov-London were positively associated with higher rates of

"ychiatric disorders in the children (Rutter et al., 1975).ijrni"arly, in the Ontario Child Health Study, Offord et al.

rates ofall psychiatric disorders in 4- to 16-year-in urban areas (Offord et al., 1987).he World Health Organization studies On schizophrenia,ducted in the 1970s, showed that prevalence was consist-tacross rural and urban areas but that outcomes differedWtificantly depending on geographic location. Although

occurs with similar frequency all over theworld,I?ple with schizophrenia in the sites in developing countries,

India, do better over time than those in industri-countries. They need less care, fewer medicines, and

yc fewer traumatic, psychotic episodes. For example, as

Hopper (2003) documents, psychiatrists in Madras, India,note that individuals with schizophrenia have had surprisingsuccess finding spouses. Thara, Padmavati, and Srinivasan(2004) attribute this success to the importance ofone aspect ofdharma, the duty to marry for the sake of the extended familyand the continuity of the lineage. The institution of marriage"adapts and endures, accommodating even those whose nup-tial capital would seem to be seriously devalued, given the per-sistent stigma attached to mental illness in India" (Hopper,2003, p. 78). Hopper associates marriage of disabled personswith a measure of "social recovery" (2007). vVe need similarinformation about ASD to know if certain cultural conditionshelp people with ASD improve their ability to learn, commu-nicate, and participate in social and economic life. Comparisonsto schizophrenia may be useful. For example, in comparisonto ASD, is there less stigma attached to the person with schizo-phrenia in some cultures because the onset of the disorder is inlate adolestence, after a family and a community have hadnearly two decades to form an attachment to the person? Isthere greater stigma attached to a person with autism becausethe onset is so early?Both developmental disorders and explanations of develop-

mental disorders (scientific or othenvise) are products of theinterplay between biological, psychological, and cultural phe-nomena. In part, as the result ofthe ·WHOstudies, public healthofficials increasingly see disabilities as simultaneously bothneurologically and culturally constructed. By including cultureas a variable in medical research, scientists understand that anillness motivates behaviors in multiple areas of social life. Adiagnosis of autism, for example, mobilizes kin groups towardcommon action or conflict and influences financial planning,choices about residence, reproduction, and employment. In theresearch community, changes in epidemiological methodsproduce different rates that can directly influence governmentpolicies and educational practices. Changes in educationalpractices also influence scientific research. Thus, in Italy,mandatory inclusion of children with disabilities, followingnational inclusion legislation in the 1970s, facilitated livelyscholarly work on the course ofASD among children who areeducated alongside unimpaired peers, as well as research onearly diagnosis of autism (levi & Bernabei, 2005).Health services research is one area in which mental health

professionals have shown that cultural differences within asingle population, like the United States} can lead to dispari-ties in recognition, diagnosis, and care. Availability of clinicalservices, access to and utilization of services, and culturalappropriateness of services vary considerably among ethnicminorities in the United States. As a result of centuries ofracism and discrimfnation, many African Americans} forexample, do not trust government health care institutions andso may not seek care. (Indeed) there is a long history ofpsychi-atric misdiagnosis in African American patients.) NativeAmericans, a largely rural population, not only live in areaswith low access to services, but often utilize traditional healersrather than doctors in clinic settings; some do not see ASD aspathological and may not seek any care at all {Conners &


Donnellan, 1995). Asian Americans underutilize the mentalhealth care system in the United States because of the shameand stigma associated with mental illness. Latinos underutilizethe mental health care system because of language barriers(USDHHS, 1999), and latina parents of autistic children aremore likely than the general population to use "nontraditional"treatments (Levy & Hyman, 2003).For ASD, David Mandell showed that, on average, white

children in the United States receive an autism diagnosisapproximately 18 months earlier than African Americanchildren (Mandell et a1., 2002). In the United States, ruralchildren with autism received a diagnosis approximately5 months later than urban children, and near-poor childrenreceived a diagnosis approximately 1 year later than childrenwhose families had an income>100% above the povertylevel (Mandell, Novak, & Zubritsky, 2005). Mandell andNovak (2005) urge researchers to conduct research on "thecomplex relationship between culture and treatment, focus-ing on cultural differences in the behavioral phenotype ofASD, recognition of symptoms, interpretation of symp-toms, families' decisions regarding medical and educationalinterventions, and interactions between families and thehealthcare system" (2005, p. 114). One implication of thisrecommendation is that even as researchers begin to studyautism in other cultures, Americans have not yet resolvedthe questions that exist in our own society about when andhow race, ethnicity, and class, among other cultural factors,influence diagnosis.In most low and middle-income countries, where there are

few or no services for children with special needs, familymanagement and treatment of children with developmentaldisabilities are influenced directly by socioeconomic anddemographic changes. As societies rapidly urbaniZe (today,for example, one fourth of the population ofSouth Korea livesin Seoul) nuclear families replace extended ones. Parents thuslose the primary source of social support for disabled personsand are compelled to seek help elsewhere, from charitableorganizations and other associational communities (such aschurches and newly formed autism societies) and from localand national governments. The demands become even greaterin households with two working parents.Taken together, the impact of sociocultural factors on

autism recognition, epidemiology, and services reveals anadditional and important aspect of our contemporary under-standings of autism: the degree to which autism can be con-ceptualized as a disability as well as a disorder. Disability isfundamentally about a person's interaction with an environ-ment ofdiscrimination, exclusion, and barriers to functioning.The concept ofl<environment" comprises attitudes, natural orbuilt physical barriers, and policies or systems that may limitan individual's potential. Toward the goal of providing acommon language for defining and comparing disabilitiesacross cultures, the WHO developed the InternationalClassification of Functioning, Disability, and Health (ICF).The ICF (which classifies health status), together with the leD

(which classifies disease status), can help experts predictfunctional outcomes, the need for services, work potential,and possibilities for successful integration into community life(WHO,2001).

language

Researchers conducting international studies of developmen-tal disabilities should remain vigilant about preconceivednotions of culture. First, at a time of unprecedentedtion movements across national borders, "culture" is nolonger synonymous with place. The rich person in India andthe rich person in England may be more culturally similar interms of values associated with health and disease than therich and the poor person in either one of those countries(Gupta & Ferguson, 1992). Thus, "culture" should not

be equated with race, class, ethnicity, or nationality only.Second, culture cannot be easily measured and perhaps shouldnot be. Each location demands different methods and types ofdescription. An ethnographic study of help-seeking for ASDin the United States would likely focus primarily on the rela-tionship beh'leen parents and health care providers, while thesame study in Kenya would likely focus on an extended-familydisease management group and how the family negotiates aplurality of coexisting medical and religious systems.Recognizing the particularities ofeach location leads to a thirdpoint: autism may be universal, but the contexts in which itoccurs are distinctive. This claim can be illustrated withence to children's acquisition oflanguage and use oflanguagein social situations.language delay and the ability to use language for social

interaction are central features of the diagnostic criteria forASD, and the h'lO are inextricably related. Indeed, though lan-guage acquisition is universal, the process and speed of lan-guage acquisition varies across cultures, in large part becauseof differences in socialization. Samoan children, for example,learn certain forms of language much later than one wouldexpect them to, not because they are developmentally delayedbut because they are restricted from doing so (Duranti & Ochs,1996). In Samoa, some syntactic operations are restricted tohighly formalized occasions in Samoan society from whichchildren are excluded, and so they do not learn them untiladulthood. However, Samoan children learn how to useemotion-marked particles (words, prefixes, or suffi..xes, thatindex internal states, such as "oops!" or "wow!") very early inchildhood-earlier than American children do-becauseemotion-marked particles are considered part of "baby lan-guage. >l This Samoan example highlights the fact that languageis not a single entity. Children learn different aspects ofguage at different times in different societies, depending onthe way a society organizes its verbal resources and exposeschildren to them.Another way of approaching the relationship behveen

language and social behavior is to study how children are bothsocialized through language and socialized to use language


.Ect:ial,life

len-ivedula-noandHin. thetries

Jnly.ould'esofASDrela-e the,milyttes a:ems.thirdich itrefer-

:causeimple)·Noulddayed.Ochs,:ted towhich

11 untiluse

'S, that:arly inJecauseby lan-nguagevf lan-

& Schieffelin, 1984; Gchs, 1998). Caregivers not onlyto their children about the kinds of social

bel,",'iOl:S that are acceptable, but they give children explicitinstructi,)fis about how and when to speak in different socialsin,atiorlS. For example, the Kaluli of Papua New Guinea do

consider babbling or any form of vocalization other thanto be a mode of communication, and a Kaluli child

does not use words is not expected to respond to the vocal,ornmunication of others (Schieffelin, 2005). In this area of

New Guinea, a parent or teacher report on communi-skills in early childhood would no doubt be influenced

these perspectives.Sirnil,arl:" to return to the Samoan example, Samoan

ehlldreninteract with caregivers in a way that restricts direct,exchanges ofmeaning. Samoan society is highly strat-with social interaction organized according to rank. Awho wants something will make the request only of

>S<lmeOlJe who is of higher rank, perhaps an adult. But thiswill not respond directly to the child. Instead he willon the request to a third someone oflower rank.not known what impact such triadic patterns of com-

>jJ'lUn,ica,tio,n might have on screening for abnormalities inbehavior using measures of social responsiveness

A"sii;ned in the United States, but the mere existence of such>j't:Yalrlal'i0l1s suggests that researchers should pay close atten-

to how communication can be shaped by society and

developing screening tools for autism, for example,can be tailored to language impairment in particular

N!a,"gllag'es and cultures. It is well known, for example, thatspeakers with autism exhibit features such as echola-

echolalia) and monotonic speech. In addition, areported impairment is pronominal reversal; in

was one of the diagnostic criteria for autism in thel.)SlvI-III. But pronominal reversal would seldom be observed" •.ulea,since pronouns are rarely used. In Korea one would

abnormalities. In Korea, as one example, people onle alUtlsm spectrum commonly exhibit a particular languagepail:m,:nt: they generally cannot use language to distin-social rank. The Korean language employs suffixes as

that denote levels of politeness and respect andare used in nearly every sentence a person speaks.

for example, thankman with the equivalent of "Thanks, Dude," andyounger sister as ifshe is an elderly woman, "Thank

lvIadarne." In Korea, and most likely in other societiesgrammatical forms to convey respect or mark

.e'snb,rp in ahierarchy, abnormalities in language and COffi-lll1icationsnj(gesti''Cofan ASD can be identifiedin a SCreen-pnstfl"ment that includes a question about the appropriateill"PF'wpriate use of honorifics."paH ""m screening, researchers face the problem ofvali-

assessments in the native language of the communityUnfortunately, researchers aU too often use an

S$Sm,:ntin a non-native language, such as English in India,

or a lingua franca in sub-Saharan Africa (e.g., Swahili in EastAfrica). There are other related issues. In communities thatare ethnically and linguistically heterogeneous, what languagedoes one use to conduct the research, and in particular, theassessments? When studying the role of culture, where doesone draw the line between cultural groups? In India, fo'rexample, a single community or school system may consist offamilies from more than a dozen cultural and languagegroups. In that setting, what language should be chosen forthe assessments?Even when a translation has been validated, it is useful to

do focus groups with parents and teachers prior to the begin-ning ofthe study to discuss language issues. For example, priorto beginning a prevalence study of elementary school-agedchildren in Korea, the first author conducted a focus group inwhich several mothers objected to some of the vocabularyused by the Korean child psychiatrists who translated andvalidated the protocols. The most objectionable word wasisanghml l a word the Korean survey translators used to screenfor odd behaviors because it means "unusual" but whichparents interpreted to mean "bizarre" or "freakish." Thus,even native health care practitioners may not be able to antici-pate problems with translation, since the meaning of a con-cept in the medical community may differ significantly fromthat in the general public (the classic American example being"hypertension," which Americans have long defined as exces-sive strain or nervousness, but which the medical communityhas defined as high blood pressure).

Interventions from a Global Perspective

Numerous interventions have been developed for the treatmentof ASD in North America and Western Europe-behavioral!educational, medical, nutritional, and pharmacologic-although many are untested. However, there have been severalreviews ofthe benefits ofbehavioral/educational interventionsin children with ASD, and the results are encouraging (NRC,2001; Dawson & Osterling, 1997; Evans et at, 2003; Rogersand Vismara, 1998, 2008). Although the specifics of these edu-cational interventions vary, there is general consensus that thecore components of a «successful" program include at leastthe following: entry into intervention as soon as an ASD diag-nosis is seriously considered; active engagement of the child inintensive, daily instructional programs for a minimum of theequivalent of a full school day throughout the year; low, ade-quate student-to-teacher ratios; and promotion of opportuni-ties for interaction with typically developing peers. A recentreport ofa randomized, controlled trial in the United States ofan intervention with toddlers, the Early Start Denver Model,shows tremendous promise (Dawson, 2010). Nonetheless,some interventions in Western Europe. and South America,continue to focus on the treatment ofmaternal psychopathol-ogy, since the refrigerator mother hypothesis persists in those


areas where psychoanalytic theory still dominates child psy-chology and psychiatry.In the Netherlands and in several Scandinavian countries,

there is extensive government support for both children andadults with ASD, providing both groups with behavioraltreatment programs, even for mildly autistic individuals. Inthe Netherlands, the government provides a residence("Work Home") for adults who are unable to live independ-ently. Multidisciplinary teams located in the RegionalInstitutions for Outpatient Mental Health Care (RIAGG)provide diagnostic and treatment services, including in-hometraining, daycare programs, placement in special educationalcenters, and residential placement. However, despite theseservices, the waiting lists for assessment by the RIAGGs arelong, and educational programs are lacking. Moreover, as inmany countries, autism services in the Netherlands are tech-nically available under the Dutch disability laws only forpeople with a diagnosis of autistic disorder and not the otherPDDs (van Engeland, 2005). In Sweden, the government hasfocused largely on the establishment of treatment homes, inthe tradition of RUdolph Steiner's concept of curative edu-cation (or Heilpedagogie) (Rydelius, 2005), some of themarranged into villages. A similar model has been adoptedby organizations in other countries, such as the Camphillcommunities in the United Kingdom, Ireland, Scotland, theUnited States, and Canada.However, while progress has been made in increasing the

number and availabilityof treatments for ASD throughout theworld, a search of the English language literature (Pub Med,2000 to the present) yielded little information on interven-tions for neurodevelopmental disorders (including autism) inlow-income countries. Three articles discussed behavioralmodification, early intervention, and medication for childrenwith autism in India (Daley, 2002, 2003j Kalra, 2005j Karande,2006). Kalra (2005), in an evaluation ofbehavior modificationand early intervention, found improvement in core symptomsof autism in some children. Karande (2006) recommendedthe use of psychotropic drugs and counseling for parents andteachers in the treatment of autism in India. Daley (2002)emphasized that the responsibility for interventions lies pri-marily with the parents since there are few special educationservices for autism and few psychologists and speech/languagepathologists available for treating autism.Because information on interventions for autism in

non-Western countries is scarce, we can use other neurodevel-opmental disorders asamodel for howa successful interventionplan can be implemented. Olusanya (2007) described aprogram in Nigeria to detect hearing loss in infants. A pilotprogram for neonatal screening for hearing loss was developedwith financial support from a local nongovernmental organi-zation (NGO). In the first year, more than 3,000 childrenwere screened and fitted with hearing aids at no cost to theparents. This public-private partnership for screening andintervention was noted as a model for other low and middle-income countries. While not focusing on autism per se, in

South Africa there was an audit of referrals from primary carefacilities (mostly managed by nurses) for a range of mentalhealth services, many ofwhich were for intellectual disabilityand scholastic problems in children under 19 years old.Following the audit, a recommendation was made that a pro-fessional "counselor" be responsible for providing psychologi-cal assessment and intervention services at the primary carelevel (Petersen, 2004). One would imagine that these "coun-selors" would be the first professionals to identify and diag-nose children with autism as well as other developmentaldisabilities.There are few estimates of the prevalence of autism in

China, although one recent study in Hong Kong suggests acomparatively low rate of 16.1 per 10,000 among child.ren lessthan 15 years old (Wong & Hui, 2008). Given the Chinesegovernment's March 2009 census, showing 251,660,000 per-sonl ages 0-14 (approximately 19% of the total population),even such a low rate would mean there are at least 402,656children in that age group with autism in China (NationalPopulation and Family Planning Commission, 2009).Unfortunately, although the Ministry of Education in Chinahas recently become concerned about services for childrenwith disabilities overall, there are not enough programs andtrained personnel to provide for children with disabilities,including autism.There are few child psychiatrists in China, and these

practice in the largest cities. Common diagnoses for Chinesechildren with autism include intellectual disability, hyperac-tive syndrome, childhood schizophrenia, and sporadicencephalitis (Tao & Yang, 2005). There is, nonetheless, aChinese classification of mental disorders adopted from theICD-9 but which uses the term "childhood autism" instead ofautistic disorder.Autism services in China, when available, include a J1Iix

of traditional treatments (i.e., herbs and acupuncture, whichare increasingly popular as treatments for autism in China,although there are no studies of their effectiveness) and morecontemporary treatments (Le., sensory integration and AppliedBehavioral Analysis/ABA) (Clark & Zhou, 2005). Part of thereason for the paucity of services for autism lies in the fact thatit was not until the 1980s that special education of any typebegan in China) and when services are available, most of theresources have been put into services for children with physicaldisabilities. There is one exemplary private program, the "Starsand Rain" Education Institute for Children with Autism inBeijing. It is reported to have served nearly 500 children (ages3-6) across China since 1993. The program uses an ABAapproach to treatment along with a parent training model.However, at a cost of approximately $36 per week, it is notfeasible for most Chinese families. There are also limited pro-grams in psychiatric facilities and no public school programsdesigned specifically for children with autism. There may,however) be some children who receive special services becausethey have an accompanying intellectual disability in additionto autism.

Culture and Autism Spectrum Disorders; The Impact on Prevalence and Recognition 125

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Growth in Global Research

global awareness of both the characteristic featuresprevalence of ASD has led to a range of new research

_activities on ASD supported by public institutions in both theStates (i.e., the Centers for Disease Control and

Pr<,verltio,n [CDC], the National Institute of Mental Healththe National Institute for Child Health and

[ [NICHDJ) and in other countries (i.e., theN"tional Institute of Mental Health and Neurosciences in

[NIMHANS], the National Institute for Health andResearch [INSEIU"I] in France, and the National

Research Institutes [NHRI] in Taiwan). Biological andresearch on autism is expanding in Europe. In France,

example, the Paris Autism Research International Sibpairstudyhas been analyzing samples from Italy, Sweden,Norway, the United States, Austria, and Belgium

(Pllilli"e et aI., 1999).reported prevalence estimates increased, funding

increased. Between 1997 and 2008, when government fundingmost medical research was unchanged. annual funding for

studies at the National Institutes of Health increased$22 million to $1l8 million (http,//www.iacc.hhs.gov/

I)(lTti'0Iio·,maJysis/20()8/inclex.shtml). Progress has also beenthrough new laws: the Combating Autism Act (signedlaw by President Bush in February 2007) was designed to

reclassified autism as a handicap rather than solely aps)'chiiatric illness and thus ensured disability rights for autistic

more noticeable than these forms of public partici-philanthropists and the families ofautistic individuals

founded private foundations to support basic scientific'",,"_ ..•c on ASD and improve the availability and quality of·,.,vi,·p< Donors are contributingmillions ofdollars to parentXXa,dv'lCacy organizations, private schools, and foundations in

United States (e.g.• for example, the Autism Science'J",ur,dation, Autism Speaks, and the Simons Foundation)'n,n i,,,,,pUnited Kingdom (e.g.• the NationalAutistic Society

The NAS, founded in 1962, has grown considerablypast decade to include more than 17,000 members. It

launched a telephone helpline that. according to theirtook 38,000 telephone calls in 2007. As a result, evenwho never before had an interest in autism, but

rked in a related area such as neuroscience or genetics, areining an increasingly long parade of autism researchers who

to secure funding through these private foundations.2003 and 2004 the number of grant applications to

e National Alliance for Autism Research, then the leading.rivate foundation for autism research (before its mergerith Autism Speaks), doubled. In 2009 alone, the Simonsoundation and Autism Speaks awarded $51,526,058 and

respectively for autism research projects (http://Much of

the force behind the growth of research and advocacy hascome from funding through the telecommunications orentertainment field: for example, Bob 'Wright, former presi-dent and CEO ofNBC Universal. founder ofAutism Speaks;the Fondation France Telecom in France, which supportsAutisme France; and Carlos Slim, the magnate who controlsthe Mexican telecommunications company Telefonos deMexico.

Conclusions

This chapter described a significant number of obstaCles toconducting international research onASD but also highlightedopportunities for advancing knowledge about how autismvaries aerOSS different settings. Even a preliminary cross-cultural exploration of the epidemiology of autism and therole that culture plays in diagnosis and treatment shows thatASD exists throughout the world, even in societies that haveno name for it. The study of the cultural variations in ASD istherefore not so much a matter of whether ASD exists, butrather the contexts in which it takes shape. The increasedfunding for research by private and public institutionsconstitutes just one important step to meet the challengesof epidemiological research on autism across cultures. Thischapter also argued that ASD should be conceptualized as acultural phenomenon and as a disability-not just as a phe-nomenon of vVestern civilization, and not just a disease.Understanding how culture influences the recognition anddefinition of autism spectrum disorders will facilitate cross-cultural adaptations of screening and diagnostic tools, andgenerate knowledge that can one day be translated into a betterunderstanding of its etiology and improved treatments. serv-ices, education, and community integration of people on theautism spectrum.

Challenges and Future Directions

Provide support to low and middle-income countries forcommunity education and awareness.Develop more efficient and affordable diagnosticassessments that are reliable and valid in multiple lan-guages and societies.In addition to ascertaining prevalence. epidemiologicalstudies should develop low cost. appropriate services forchildren identified through screening, surveillance, andresearch efforts.In order to develop culturally appropriate services,including educational programs, future epidemiologicalstudies should study the impact of autism on the child aswell as his/her family.


SUGGESTED READINGS

Daley, T. (2002). The need for cross-cultural research on the perva-sive developmental disorders. TranswItural Psychiatry, 39(4),531-550.

Fombonne, E. (2009). Epidemiology of pervasive developmentaldisorders. Pediatric Research, 65(6): 591-598.

Grinker, R. R. (2007). Unstrange minds: Remapping the world ofautism. New York: Basic Books.

Table 7-2.Appendix: Selected epidemiological studies

Oehs, E., Kremer-Sadlik, T., Gainer Sirota, K., & Solomon, O. (2004).Autism and the social world: An anthropological perspective.Discourse Studies, 6(2),147-183.

Trostle, J. A. (2005). Epidemiologyandwltl/re. Cambridge: CambridgeUniversity Press.

APPENDIX

Europe

Gillian Baird, F. R.C. The South UK (South Birth cohort study of 56,946 children (18 ASD subgroup(s); All ASDPaed Thames Special Thames) the prevalence of month birth cohort subgroupsGuy's and St Thomas' Needs and ASD from 12 districts July 1990-Dec 1991) Diagnostic criteria: ICD-I0Hospital Autism Project in the South Thames screened at age 9 Source of cases: ongoingLondon, UK (SNAP) area. years; in-depth assessmentsTony Charman, PhD assessment age 9 toBehavioural & Brain 14 years.Sciences UnitInstitute of ChildHealthUniversity CollegeLondon, UK

Jean Golding, PhD Avon UK (Avon) Prospective cohort Children born in ASD subgroup(s); All ASDsInstitute ofChild Longitudinal starting in pregnancy 1991-1992 Diagnostic criteria: ICD-I0Health Study of Parents to identify the Source of cases:University of Bristol, and Children environmental and Service provider records forSt Michael's Hill, BS2 (ALSPAC) genetic antecedents ascertainment ofASD; traits8EJ of the autistic identified from maternalBristol, UK spectrum disorders, completion ofsets of

and of the traits that questions completed atmake up the autistic different agesspectrum.

Eric Fombonne, MD, Staffordshire UK Successive prevalence 160 case children ASD subgroup(s); AU ASDFRCPsych(UK) Surveys (Staffordshire) studies ofPDDs identified from subgroupsMcGill University and among preschoolers, children born from Diagnostic criteria: DSM-IV,Montreal Children's to examine temporal 1992 to 1998 ICD-I0Hospital trends and changes Source(s) ofcases:Montreal, Quebec in risk factors repeated screening of the

overtime. general population

Camilla Stoltenberg, ThcASD Nonvay Pilot study to Children born in ASD subgroup(s); AllASDMD,PhD, Healthcare and monitor the Norway 1999 or later subgroupsNonvegian Institute of Registry Project prevalence ofASD in who have been given Diagnostic criteria:Public Health (NIPH), Norway, and possibly an ASD diagnosis in A1IICD-IO; F84.o-F84.9 willOslo, Norway providing the the Norwegian health be included.Nydalen, 0403 Oslo, foundations for a care system Expected sample size:Norway permanent national 100G-2000 cases.

ASD registry.

(Continued)

127

. (2004).;;pective.

to determine identified from 7- to All ASD subgroupsmbridgeprevalence rates of 9-year aIds in 2003 in Diagnostic criteria:ASD, test the ASSQ Bergen, Norway. DSM-IV (plus Giliberg

Sweden as a screening device criteria for Asperger'sfor ASD, assess ASD syndrome)risk factors using Source ofcases:screening devices and general population screeo-neuropsychological! and clinic-referred casesneuroimaging.

Gene- Norway Nested case-control Children born in ASD subgroups:Environment study focused on the 1999 through May All A$D subgroupsInteractions in role ofgene- 2008 and screened at Diagnostic criteria: DSM-IVan Autism Birth environment 36 months for ASD. Source ofcases;Cohort (ABC) interactions in the Screening of the MoBa cohort

etiology ofASD. The ofchildren at 36 months;ABC study builds op referrals (parents or provider-the Norwegian based); search of health

\SD Mother and Child registriesCohort Study

J-I0 (MoB.).19 Gillberg. Goteborg Sweden Cross-sectional Case children ASD subgroup(s):

Prevalence (Goteborg) prevalence study of identified from clinic All ASD subgroups includedstudies of ASD. and population Diagnostic criteria:Autism screening of 7- to DSM-IV criteria (plus

Sweden Spectrum 9-year-olds in Gillberg criteria forDisorders. Goteborg. Sweden. Asperger's syndrome)

Source ofcases:general population screen-and clinic-referred cases

\SDsPhD Childalld Sweden Cohort study of All twins (n 24,000) ASD Subgroup(s):Cl-1O

of Adolescent Twin liveborn twins to born in Sweden All ASD subgroups

is for Epidemiology, Study in Sweden examine genetic and during Diagnostic criteria: DSM-IVInstitute, (CATSS) environmental (Expected number of (plus Gillberg criteria for. traitsSweden influences for ASD hvin pairs with Asperger's syndrome).

and comorbid 800.) Source of cases:conditions (e.g., general population screeningADHD). with A-TAC and clinical

testingGillberg, Faroe Islands Faroe Islands, Cross-sectional All children in the ADS subgroup(s):.\SD

ASD Genetic Denmark prevalence study to Faroe Islands, aged All ASD subgroups includedEpidemiology estimate the years (n:= 44 Diagnostic criteria: DSM-IVStudy prevalence ofASD ASD cases). criteria (plus Gillberg criteria

Sweden and examine the for Asperger's syndrome)genetic and Source ofcases:lheenvironmental school-based screening and(mercury) risk clinic-referred cases

.\SD factors for ASD in ageneticallyhomogeneous

-1,.9 will

(Continued)

128

Table 7-2. (Con/d.)

Paul Thorsen, MD, Danish national Denmark Case-control study to 473 case childrenPhD, case-control examine the born in DenmarkInstitute of Public study on infantile association between from 01/0111990Health, autism genetic factors and to12/3111999 andNANEAat the development of diagnosed before ageDepartment of infantile autism, and 10 years.Epidemiology, to develop theUniversity ofAarhus methodologicalAarhus, Denmark expertise for studying

genetic markers forautism.

Marko KieHnen, PhD Autism in Finland (Qulu Retrospective cohort 152,732 childrenand Marja-Leena Northern Finland and Lapland) study to estimate the born between 1979-Mattila. MD prevalence ofautism 1994 and age 3-18 inDepartment of in Oulu and Lapland, 1996--1997 (timePaediatrics and to examine period for caseClinic of Child secular in ascertainment)Psychiatry incidence.University ofOuluOulu, Finland

Marko KieHnen. PhD An Finland (Oulu Retrospective cohort 5,184 children born inand Marja-Leena Epidemiological and Lapland) study to evaluate the year 1992 andMattila, MD and Diagnostic diagnostic process screened in 2000-Department of Study of and prevalence rates 2001; 125 screenedPaediatrics Asperger's ofAsperger's positive and 110Clinic ofChild disorder disorder. examined; 19Psychiatry Asperger caseUniversity ofOulu children and 13Oulu, Finland children with autistic

disorder

Evald Sremundsen, Prevalence of Iceland Cross-sectional Children born 1994-PhD autism spectrum survey too examine 1998 identifiedState Diagnostic and disorders in the prevalence of through medical andCounseling Center Iceland in ASD in Iceland and other service systemKopavogur, Iceland children born in to identify risk records through

1994--1998. factors associated January 2008with ASD.

Manuel Posada. PhD. Spanish Autistic Spain (four Population-based Children 18-36MD, Spectrum regions) registry and a nested months of age inResearch Institute for Disorders study to 2006Rare Diseases. Health Register (TEAR study the feasibilityInstitute Carlos III in Spanish and and costs of a28029. Madrid. Spain, SASDRin population screening

English) program using theM-CHATandanalyze risk factorsfor in incident cases.

ASD subgroup(s):Infantile autism diagnosedbefore age 10 yearsDiagnostic criteria: ICD-8and lCD-10Source(s) ofcases:Danish Psychiatric CentralRegistry and Danish NationalPatient Registry

ADS subgroup(s):Autistic disorder andAsperger's disorderDiagnostic criteria:DSM-IV, ICD-IO (Giliberg &Szatmari. et a1. criteria)Sources of Cases:Hospital records and therecords of the centralinstitutions of theintellectually disabled

ADS subgroup(s):Autistic disorder andAsperger's disorderDiagnostic criteria:DSM-IV, ICD-IO (Gilibergand Szatmari et al. criteria)Sources ofCases:Population screeningfollowed by semistructuredobservation and testing

ASD subgroup(s);AJI ASD subgroups listed inIhelCD-1ODiagnostic Criteria; ICD-IOSource ofcases:Service records of the referralcenter for autism and otherdevelopmental disabilities

ASD subgroup(s);All ASD subgroupsDiagnostic Criteria: DSM-IV-TRSource ofcases: population-based screening in thefollowing venues: PublicHealth Care System-WellChild Care visits (WCe) andCompulsoryVaccinationProgramParent's organizations. ASDsettlements and educationaland social services

(Continued)

129

Autism in to estimate the 1990, 1991, and 1992, Autistic disorderPortugal prevalence of autism living in mainland Diagnostic criteria:

and to describe its Portugal or the DSM-1Vclinical Azores and attending Source(s) of cases:characterization and elementary school in School-based screening

,I associated medical the school year of followed by clinical)n31 conditions. 1999/2000 assessment

180 case ASDPervasive (Quebec) study to evaluate identified from All ASDsDevelopmental time trends in children born Diagnostic criteria: DSM-IVDisorders in relation to use of behveen 1997 and Sources ofCases:Montreal, thimerosal- 1998 and ascertained special educational registers

rg& Quebec containing vaccines in 2003andMMR.

Schendel, TheCADDRE USA Population-based Children' born from ASD subgroup(s):Study: Child (6 sites: case-cohort study to September 2003 All ASDs subgroupsDevelopment and California, investigate risk through August 2005; Diagnostic criteria: DSM IVAutism Colorado. factors for ASD and Eligible children must Source ofcases:

Georgia. phenotypic be 30--60 months of intensive screening and caseMaryland, North subgroups ofASD. age during data finding in dinics and specialCarolina, and collection. programs for young childrenPennsylvania) Expected sample size with developmental delays

is 650 children withASD across 6 sites.'fg

lisa Croen,talLisa Miller,

,ed MSPHCraigPhD

Carolina: Julielin PhD

Jennifer-to PhD,

:erralChildren who are 8 ASD subgroups included: Allher Autism and USA (Alabama, Ongoing population-

Developmental Arizona, based surveillance of years old (selected ASDscsDisabilities Colorado. ASD in 8-year-old states) beginning in Diagnostic criteria:Monitoring Florida. Georgia, children in 11 sites in 2000 and monitored Systematic review ofserviceNetwork Maryland, the United States to biannually provider records---eclucation

;'I!-IV- (ADDM) Missouri, North determine prevalence (selected sites) and medical-Carolina. and trends. by expert clinicians usingPennsylvania, DSM-IV criteria

Road. South Carolina, Sources ofcase: school,Wisconsin) medical. and other service

provider records:) and

Childhood USA (Northern Case-control study to Children born 1995- ASD subgroup(s): All ASD'0

Autism Perinatal California) investigate prenatal 1999 in a Kaiser subgroups

.\SD Study (CHAPS) and perinatal risk Permanente hospital Diagnostic criteria: DSM-N

ional factors for autism in northern CA Source of cases:spectrum disorders. Kaiser Permanente electronic

medical records

(Continued)

130

Table 7-2. (Contd.)

Lisa eroen, PhDKaiser PermanenteNorthern CaliforniaDivision of ResearchOakland, CA 94612

Lisa Croen, PhDKaiser PermanenteNorthern CaliforniaDivision ofResearchOakland, CA 94612

Michaeline Bresnahan,PhDColumbia UniversitySchool of PublicHealthNcwYork City

Cecilia Montiel-Nava,PhDSchool of EducationLa Universidad delZulia.Maracaibo. EstadoZulia. Venezuela

Cristiane Silvestre dePaulaPervasiveDevelopmentalDisorders Program;MackenziePresbyterianUniversity, BrazilSao Paulo, Brazil.

Early AutismRisksLongitudinalInvestigations(EARLl)

Early Markers forAutism Study(EMA)

Aruba AutismProject

EpidemiologicalFindings ofAutism SpectrumDisorders inMaracaiboCounty

Prevalence ofpervasivedevelopmentaldisorders insoutheast Brazil:A pilot study

USA (multisitestudy-NorthernCalifornia,Pennsylvania,and Maryland)

USA (NorthernCalifornia)

Aruba

Venezuela(MaracaiboCounty)

Brazil(Atibaia)

Prospective,longitudinal, cohortstudy to identifyearly autism riskfactors andbiomarkers based onan enriched-riskpregnancy cohort.

Case-control study toidentify early(prenatal andneonatal) biomarkersfor autism spectrumdisorders.

Retrospective birthcohort study toexamine prevalenceand cumulativeincidence ofASD inAruba.

Cross-sectionalsurvey to estimatethe prevalence ofautism spectrumdisorders (ASD)among childrenbenveen 3 and 7years ofage inMaracaibo County.

Cross-sectionalsurvey to estimatethe prevalence ofpervasivedevelopmentaldisorders insoutheast Brazil.

Women who have atleast one ASD-affected child whohave a subsequentpregnancy. Womenwill be followedthrough theirpregnancies and theinfants will befollowed throughage 3.

Children born July200D-Sept.2001

All children born inAruba in 1990-1999and followed through2003.

Children aged 3 to 7years, and childrenborn in the 2003 (Syears old).

7- to 12-year-oldchildren

ASD subgroup(s):All ASD subgroupsDiagnostic criteria: DSM-IVSource ofcases (probandchild)clinical care providers, serviceproviders, educationalsystem, self-referrals.

ASD: All ASD subgroupsDiagnostic criteria: DSM-IVSource ofcases:Regional Center ofOrangeCounty (review of serviceprovider records)

ASD subgroup(s) included:Autistic Disorder, PDD-NOS,Asperger, Rett, disintegrativeDiagnostic Criteria: DSM-IVSource of Cases:dinicaVmedical records

ASD subgroup(s): All ASDsDiagnostic criteria: DSM-IVcriteriaSource of cases:School-based screening anddinic-referred cases

ASD subgroup(s): All ASDscombinedDiagnostic Criteria: DSM IVcriteriaSource ofcases:population based screeningstudy

Middle East, Africa, Asia, and Australia

Shlomo (Sol)Eaglstein, PhDDepartment ofResearch, Planningand TrainingState ofIsrad Ministryof Social AffairsJerusalem 93,420Israel.

The IsraeliMinistry of SocialAffairs (MOSA)Autism Registry.

Israel(Jerusalem)

Population-basedregistry to estimatethe prevalence ofautismlASD in Israel,by means ofdetecting the numberand age ofpeoplediagnosed who applyfor services andto track placement(home, specialeducation, assistedliving, etc).

Expected sample size4,000 case children(12107)

ASD subgroup(s) included:Autism, Asperger'ssyndrome, and PDD-NOS.Diagnostic criteria: DSM-IVSource ofcases: childrenapplying for services.

(Continued)

131

incidence and (Yokohama incidence study of up to age 5 years (ICD-I0)

I-IV prevalence of City) "childhood autism." was calculated for Source of cases; Yokohama

d Centre childhood autism Attempt to replicate childhood autism City Routine Health CheckupJapan in children in earlier among a birth cohort (I8 months).

;ervice Japan epidemiological from four successiveJapan study using identical years (1988 to 1991).(Yokohama) methods in a large

population withscreening beginningat 18 months.

)S MKC Nair, MD, PhD Neuro- India Cross-sectional study 9,000 children aged ASD subgroup(s);

'Ii-IV ofPedi- developmental (5 regions) to examine the 2-9 years old will be All subgroups 0'£ ASD& Director, Disabilities prevalence of 10 screened with a Diagnostic criteria: DSM-IV

nge Development among Children neurodevelopmental neurodevelopmental Source ofcases:

'co In India: An disabilities. including disability screening Community based householdINCLEN Study ASDs, in children tool. Children with screening

ded:aged 2-9 years in autism will be

)-NOS, India and gather determined based oninformation on a clinical examination

;rative potentially applying agreed onmodifiable risk; study criteria forfactors. ASDs

\SDsM-IV

Grinker. PhD Study 1: The South Korea Study 1: Birth cohort Study 1: 36, 592 cases ASD subgroups: All ASD

s: and Washington Prevalence of (llsan) study to examine the screened 9/2005- subtypesAutistic prevalence ofASD; 8/2006, confirmative Diagnostic criteria

DC Spectrum to establish a diagnoses completed DSM IV using ADOS andDisorder (ASD) population-based 2/2006-7/2009, ADI-Rin Korean cohort ofchildren among children born Source ofcases:School-age with ASD for future 1995-2000. Study: community based

ASDs Children genetic and Study 2: 2001-2002 screening; family referrals;Study 2: environmental birth cohort; screened and disability registry

SMIV Prospective studies. to investigate at age 6 years inExamination of public attitudes 2007-20086-year about ASD; and to

c:ning CT 06520 Cumulative examine patterns ofIncidence of service utilization inASDs: A Total Korean children withPopulation Study ASD.

Study 2: Prospectivebirth cohort study to

luded: examine theincidence proportion

'JOS. ofASD in children3M-IV followed from birth

to 6

(Continued)


Table 7-2. (Contd.)

Craig}. Newschaffer, Epidemiologic China Pilot study to 3- to 5-year-old ASD subgroup(s) included:PhD Research on (Shandong examine methods for children residing in ADI-defined autism.Associate Professor of Autism in China Province) population-based the Weicheng district Diagnostic criteria: ADI-REpidemiology screening to estimate ofWeifang PrefectureCenter for Autism and prevalence ofShandongDevelopmental estimation toward Province.Disabilities capacity-building forEpidemiology conductingDepartment of epidemiologicEpidemiology research on ASD in

China.

Joe Cubells, MD, PhD Genetic China (Wuiiang Pilot study to Children born in ASD subgroup(s):Department ofHuman Epidemiology of County near develop, validate, 1994-1996 and All ASD subtypesGenetics Autism in China: Beijing) and field test assessed in latc Diagnostic criteria: DSM-IVEmory University Phase 1 culturally 2008-2009 Source ofcases:School ofMedicine appropriate local health centers whereAtlanta, GA 30322 screening methods original study participantsUSA for identifying receive their health care.

potential ASD casesin the offspring ofmothers who wereenrolled prior topregnancy in a largelongitudinal cohortstudy assembled in1994-1996.

Virginia C. N. Wong, Epidemiological China (Hong Retrospective cohort Children aged under ASD subgroup(s):MD Study ofAutism Kong) study to investigate 15 years who had a All casesDivision of Child Spectrum the epidemiological diagnosis of ASD in Diagnostic Criteria:Neurology, Disorder in Hong pattern of ASD in 1986 to 2005 DSM-IlI-R or DSM-IVDevelopmental Kong Chinese children. Source of cases:Paediatrics, and Autism Spectrum DisorderNeurohabilitation Registry for Children inDepartment of Hong KongPediatrics &Adolescent Medicine,The University ofHong Kong, HongKong, China

Li-Ching lee, PhD, Population-based Taiwan Pilot activities to Children in first and ASD subgroup(s): AI! ASDScM prevalence study support development second grades, aged subgroupsDepartment of of autism ofepidemiology and 6-7, to be ascertained Diagnostic Criteria: DSM-IVEpidemiology spectrum clinical capacity for a in 2009. Source ofcases:Bloomberg School of disorders in population-based Screening of children in firstPublic Health Taiwan prevalence study. and second grades.Johns HopkinsUniversityBaltimore MD 21205

Glenys Dixon, PhD The West Western Ongoing population- 1500 case children ASD subgroup(s): All ASDTelethon Institute for Australian Australia (WA) based registry ofASD ongoing starting in subtypesChild Health Research Autism Register for WA to describe 1999 Diagnostic criteria: DSM-IVCentre for Child the pattern of autism Source of Cases: CaseHealth Research diagnoses and reporting by diagnosingUniversity ofWestern prevalence rates of clinicians and WA serviceAustralia ASD inWA. system recordsPerth, Australia


d:

R,

[-IV

're,ts

\SD

3M-IV

n first

ASD

SM-IV

REFERENCES

and Developmental Disabilities Monitoring Nehvork 2006Principal Investigators (ADDlvO. (2009, December 18).Prevalence of autism spectrum disorders: Autism andDevelopmental Disabilities Monitoring Network, United States,(2006), Surveillance summaries. AforbidityandlV!ortality WeeklyReport, 58(No. SS#10).

.Baird, G., Simonoff. E., Pickles, A, Chandler,S., Loucas, T" Meldrum,D., & Charman, T. (2006). Prevalence ofdisorders of the autismspectrum in a population cohort of children in South Thames:The Special Needs and Autism Project (SNAP). Lancet, 368,210--215.

Bandim, J. M., Ventura, L. a.,MilIer, M. T.,Almeida, H. C, & SantosCosta, A E. (2002), Autism and Mobius sequence: An explor-atory study of children in Northeastern Brazil. Arquivos deNeuro-Psiquiatrica, 61(2-A),

Barbaresi, W., Katusic, S., Colligan, R, Weaver, A, & Jacobsen, S.(2005). The incidence ofautism in Olmsted County,Minnesota,1976--1997: Results from a population-based study. Arc1Jives ofPediatric andAdolescent J"fedicine, 159, 37-44.

B"'nevik·OlsS<ln, M., Giliberg, c., & Pernell. E. (2008). Prevalenceof autism in children born to Somali parents living in Sweden:A brief report. Developmental Medicine and Child Neurology,50(8),598-60I.

B"ron-Cr,hen, S. (2004). The essential difference: Male and femalebrains and the truth aboJlt autism. New York: Basic Books.

Bn'd'lock,D. L., & Parish, S. L, (2001). An institutional history ofdisability. In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.),Handbook of disability studies (pp. 11-68). Thousand Oaks,CA: Sage,J. R, & Rogers, S. J. (2003). Cultural issues in autism. In

S. Ozonoff, S. J. Rogers, & R. 1. Hendren (Eds.), Autism spec-trum disorders: A research review for practitioners. Washington,DC: American Psychiatric Publishing.

B. (2008). Autism and social movements: French parents'associations and international autistic individuals' organiza-tions, Sociology ofHealth and Illness, 30(1), 76-96.H.-L., Juang, Y.-Y., Wang, W.-T" Huang, c.-I., Chen, C.-Y.,

& Hwang, Y.-S. (2003). Screening for autism spectrum disorderin adult psychiatric outpatients in a clinic in Taiwan. GeneralHospital Psychiatry, 25, 284-288,

J, Ruangdaraganon, N., Sombuntham, T., &Roongpraiwan, R (2007). language development among thesiblings of children with autism spectrum disorder, Autism,11(2),153--164.E. & Zhou, Z. (2005). Autism in China: From acupuncture

to applied behavioral analysis. Psychology in the Schools, 42(3),285--295.D. J., & Volkmar, F. R. (1997). Conceptualizations of autism

and intervention practices: international perspectives. InD. J. Cohen & F.R. Volkmar. (Eds,), Handbook of autism andpervasive developmental disorders (2nd ed., pp. 947-950), NewYork: Wiley.

J. 1., & Donnellan, A M. (1995). Walk in beauty: Westernperspectives on disability and Navajo familylcultural resil-ience. In H. McCubbin, E. Thomson., A. Thompson, & J.Fromer (Eds.), Resiliency in ethnic minority families: Nativeand immigrant American families (Vol. I, pp. 159-182). NewYork: Sage.

Croen, 1. A., Najjar, D. V.• Fireman, B" & Grether, J. K. (2007).Maternal and paternal age and risk ofautism spectrum disorders.Archives a/Pediatrics and Adolescent iVfediciue, 161(4), 334-'-3,10.

Cuccaro, M. 1., Wright, H. H" Rownd, C. V., & Abramson, R. K.(1996). Brief report: Professional perceptions of children withdevelopmental difficulties: The influence of race and socioeco-nomic status. Jot/mal of Autism and Developmental Disorders.26(4),461-469.

Daley, T. (2002). The need for cross-cultural research on the pervasivedevelopmental disorders. Transcultural Psychiatry, 39(4),531-550.

Daley, T. (2003). From symptom recognition to diagnosis: Childrenwith autism in urban India. Social Science and Medicine, 58,1323-1335.

Daley, T., & Sigman. M, (2002), Diagnostic conceptualization ofautism among Indian psychiatrists, psychologists, and pedia-tricians, Journal of Autism and Developmental Disorders,32(1),13-23.

Dawson, G., Rigers, S" Munson, J., Smith, M., Winter, J"Greenson, J" & Varley, J. (2010). Randomized, controlled trialof an intervention for toddlers with autism: the Early StartDenver ModeL Pediatrics, 125(0, eI7-23.

Dawson, G. & Osterling, J. (1997). Early inautism: Effectiveness and common elements of currentapproaches. In lvI, J. Guralnick (Ed.), The effectiveness of earlyintervention: Secondgeneration research (pp. 307-326) Baltimore:Brookes.

Duranti, A., & Ochs, E, (1996). Use and acquisition of genitive con-structions in Samoan. In D. Siobin, J. Gerhardt, A. Kyratzis, &G. Jiansheng (Eds.), Social interaction, social context, andlanguage: Essays in honor of Susan Ervin-Tripp (pp. 175-190).Mahwah, NJ: Erlbaum.

Durkin,M. S. (2002). The epidemiology ofdevelopmental disabilitiesin low-income countries. i'v[entalRetardation andDevelopmentalDisabilities Research Reviews, 8, 206--21 L

Durkin, M.S., Davidson, 1. L., Hasan, Z.M., Hasan, Z., Hauser, W. A,Khan, N., et al. (1992). Estimates of the prevalence ofchildhoodseizure disorders in communities where professional resourcesare scarce: Results from Bangladesh, Jamaica, and Pakistan.Pediatric and Perinatal Epidemiology, 6. 166--180,

Durkin. M.S., Hasan, Z. M., & Hasan, K. Z. (1998). Prevalenceand correlates of mental retardation among children inKarachi, Pakistan. American Journal of Epidemiology, 147,281-288.

Durkin, M.S., lvIaenner,M. J., Newschaffer, C. 1., Lee. L.-c', Cunniff,C. M., Daniels, J. 1., eta!' (2008, October2l). Advanced paternalage and the risk ofautism spectrum disorders, American JournalofEpidemiology, 168(11), 1268-1276. Epub.

Durkin, M. S., Maenner, MJ, Meaney, F. J" Levy, S.E., DiGuiseppic., Nicholas, J. 5., et a1. (2010). Socioeconomic inequality in theprevalence of autism spectrum disorder: evidence from a uscross-sectional study. PioS One,S: e11551.

Ehlers. S., Gillberg, c., & Wing, L. (1999). A screening questionnairefor Asperger's syndrome and other high-functioning autismspectrum disorders in school age children. Journal ofAutism andDevelopmentalDisorders, 29,

Eldin,A. 5., Habib, D., Noufal,A, Farrag, S•• Bazaid, K.,Al-Sharbati, M.,& Gaddour, N. (2008). Use of M-CHAT for a multinationalscreening of young children with autism in the Arab countries,international Revtew ofPsychiatry, 20(3), 281-289.


ESEMeD/MHEDEA (2004). Prevalence of mental disorders inEurope: Results from the European Study of the Epidemiologyof Mental Disorders (ESEMeD) project. Acta Psyc1liatricaScandinavica, 109(suppl. 420), 21-27.

Evans, J., Harden, A., Thomas, J., & Benefield, P. (2003). Support forpupils with emotional and behavioural diffiwlties (BED) in main-stream primary school classrooms: A systematic review of the effec-tiveness of interventions [online]. NFER (National Foundationfor Education Research). eppLioe.ac.ukJEPPIWebContentlreelJreview... /EBD/EBD1.pdf

Faraone, S. V., Sergeant, J., Gillberg, C, & Biederman, J. (2003). Theworldwide prevalence of ADHD: Is it an American condition?World Psychiatry, 2(2),104--113.

Faris, R E. 1., & Dunham, H, W. (1939). Mental disorders in urbanareas: An ecological study of schizophrenia and otller psychoses,New York: Hafner.

Fombonne, E. (2003). Epidemiological surveys of autism and otherpervasive developmental disorders: an update. Journal ofAutismand Developmental Disorders, 33(4), 365-382.

Fombonne, E., Zakarian, R, Bennet, A, Meng, 1., & McLean-Heywood, D. (2006) . Pervasive developmental disorders inMontreal, Quebec, Canada: Prevalence and links withzations. Pediatrics. 118( I), 139-150,

Fombonne, E. (2007). Epidemiology and child psychiatry. In A.Martin, F. Volkmar, M. Lewis (Eds.), Lewis's child and adolescentpsychiatry: A comprehensive textbook (pp. 149-170), Lippincott,Williams, & Wilkins.

Fombonne, E. (2009). Epidemiology of pervasive developmentaldisorders. Pediatric Research. 65(6), 591-598.

Fountain. C. King, M.D., & Bearman, P.S. (2010). Age of diagno-sis for autism: individual and community factors among 10birth cohorts, Journal ofEpidemiology and Community Health,Epub, October 25.

Gillberg, c., Lamberg, K.• & Zeijlon, 1. (2006). The autism epi-demic. the registered prevalence of autism in a Swedish urbanarea, Journal of Autism and Development Disorders, 36(3),429-435.

Grinker, R. R (2007). Unstrange mitlds: Remapping tile world ofautism. New York: Basic Books,

Grinker, R.R. (2010a). "In Retrospect: The Five Lives ofthe PsychiatryManua!." Nature (November 11), 468:

Grinker, RR. (2010b), "Disorder Out of Chaos." New York Times,February 10, A23.

Grether. J. K, Anderson, M. c., Croen, L. A., Smith, D.• Windham,G. C. (2009) Risk ofautism and increasing maternal and paternalage in a large North American population. American JournalofEpidemiology, 170: 1118-1126.

Gupta. A., & Ferguson, J. (1992). Beyond culture: space, identity, andthe politics of difference. Cultural AntlJTopology, 7(1),

Holden, B., & Gitleson, J. P. (2006). A total population study ofchal-lenging behavior in the county ofHedmark, Norway: prevalenceand risk markers. Research in Developmental Disabilities, 27(4),456-465.

Honda, H., Yasuo Shimizu, Milio Imai, & Yukari Nitto. (2005).Cumulative incidence of childhood autism: a total populationstudy of better accuracy and precision. Developmental Medicineand Child Neurology, 47.10-18.

Hopper, K. (2003). Interrogating the meaning of culture in theWHO international studies of schizophrenia. In J. Jenkins(Ed.), Schizophrenia. culture. and subjectivity: The edge ofexpe-rience (pp, 62-86). Cambridge: Cambridge University Press.

Hopper, K., Harrison, G., Janca, A., & Sartorius, N. (Eds.). (2007).Recovery from schizophrenia: an international perspective: Areport from the WHO collaborative project, the international studyofschizophrenia. Oxford: Oxford University Press.

Honvath, E., & Weissman, M. M. (2000), The epidemiology andcross-national presentation of disorder.Psyc11iatric Clitlics ofNorth America, 23(3), 493-507.

Hugo, C J., Boshoff, D. E. 1., Traut, A., Zungu-Dinvayi. N., &Stein, D. J. (2003). Community attitudes toward and knowledgeofmental illness in South Africa. Social Psychiatry andPsychiatricEpidemiology, 38, 715-719,

Icasiano, F.• Hewson, P., Machet. P., Cooper, c., & A.(2004). Childhood autism spectrum disorder in the Barwonregion: a community based study. Joumal of Paediatrics andChild Health, 40(12), 696-701.

Islam. 5., Durkin, M. S., & Zaman, S. (1993). Socioeconomic statusand the prevalence ofmental retardation in Bangladesh, lYletltalRetardation, 31, 412-417.

Kalra, V" Seth, R, & Sapra, S. (2005), Autism: experiences in a tertiaryhospital. Indian Journal ofPediatrics, 72(3), 227-230.

Karande, $, (2006). Autism: a review for family physicians. IndiatlJournal of iVIedical Sciences (Practitioner's Section), 60(5),20S-215.

Kasmini, K., & Zasmani, S. (1995). Asperger's syndrome: a report oftwo cases from Malaysia. Singapore Medical Jot/mal. 36,641-643.

Kendell, R. E., Cooper, J. E.• Gourlay, A. J., Copeland, J. R. M.,Sharpe, 1., & Gurland, B. J. (197l). Diagnostic criteria ofAmerican and British psychiatrists. ArchivesofGeneralPsychiatry,25(2),123-130.

Khan. N., & Hombarume, J. (1996). Levels ofautistic behavior amongthe mentallyhandicapped children in Zimbabwe, Cen tralAfricanJournal ofMedicine, 42(2), 39,

Kielinen. M., Linna, S. 1., & Moilanen, 1. (2000), Autism in north-ern Finland. European Child and Adolescent Psychiatry, 9(3),162-167.

King, M. & Bearman, P. (2010). Diagnostic change and the increasedprevalence of autism. International Joumal ofEpidemiology, 38,1224-1234.

Kleinbaum, D. G,. Kupper, L, K., & Morgenstern, H. (l982).Measures of disease frequency: Incidence. Epidemiology andresearch: Principles and quantitative measures (pp, 97-115),New York: Wiley.

Krug, D. A., Arick, J. R., & Almond, P. J. (1980), Behavior checklistfor identifying severely handicapped individuals with high levelsof autism behavior, Journal of Child Psychology and Psychiatryand Allied Disciplines, 21(3), 221-229,

La Malfa, G., Lassi, S., Bertelli, M., Salvini, R., & Placidi. G. F. (2004).Autism and intellectual disability: a study of prevalence on asample of the Italian population, Journal ofIntellectual DisabilityResearch, 48(3),

Lauritsen, M. B., Pedersen, C. B., & Mortensen, P. B. (2004). Theincidence and prevalence of pervasive developmental disorders:a Danish population-based study. Psychological Medicine, 34,1339-1346.

Lemelson, R. (2003), Obsessive-compulsive disorder in Bali: thecultural shaping of a neuropsychiatric disorder. TransculturalPsychiatry, 40(3), 377-408.

Levi, G" & Bernadbei, P. (2005). Italy. In F. R. Volkmar, R. Paul,A. Klin, & D. Cohen (eds.), Handbook of autism and pervasivedevelopmental disorders (3rd ed., pp. 1221-1223). New York:Wiley.

Culture and Autism Spectrum D;sorders: The Impact on Prevalence and Recognition 135

2007).ive: A,{ study

!:! andsorder.

N., &wledge,;hiatric

1al1, A.3anvonics and

c status,'-'fen tal

tertiary

, Indian60(5),

eport of41-043.R.M.,;teria of"/chiatry.

r among,IAfrican

:l north-"y, 9(3),

':lcreasedAogy.38,

(1982).logy and97-115).

S., & Hyman, S. (2003). Use of complementary and alterna-tive treatments for children with autistic spectrum disorders isincreasing. Pediatric Annals, 32, 685-691.K., King, .M., & Bearman, P, (2009). Social influence andthe autism epidemic. American Journal of Sociology, 115(5),1387-1434.c., Rutter, M. L., Dilavore, P. C, & Risi, s. (1999). AutismDiagnostic Observation Schedule-WPS, Los Angeles: Westernpsychological Services.V. (1978). Childhood autism in Africa. Journal of Child

Psychology and Psychiatry, 19,231-244.F" Shu, B., Chiang, T., & lin, S. (2010). Parental concernsbased general developmental screening tool and autism risk: theTaiwan national birth cohort study. Pediatric Research, 67(2),226-231.

Maem"', M. 1. & Durkin, M. S. (2010). Trends in the prevalenceof autism on the basis of special education data, Pediatrics,126(5): 1018-1025.

M"gnu55;on, P., & Saemundsen, E. (2001). Prevalence of autism inIceland. Journal ofAutism and Developmental Disorders, 31(2),153-163.

D. S., Listerud, J., levy, S. E., & Pinto-Martin, J. A. (2002),Race differences in the age at diagnosis amongMedicaid-eligiblechildren with autism. JOllrnal ofthe American Academy ofChildand AdolescentPsychiatry, 41(12), 1447-1453.

D. S., & Novak, M. M. (2005). The role of culture in fam-ily's treatment decisions for children with autism spectrumdisorders. j\[ental Retardation and Developmental DisabilitiesResearch Reviews, 11(2).110-115.

D, S.• Novak, M. M.• & Zubritsky, C D, (2005), Factorsassociated with age of diagnosis among children with autismspectrum disorders. Pediatrics. 116(6), 148Q--.1486.

(2009) .Autism spectrum dis-orders among preschool children participating in the Minneapolispublic schools early childhood special edllcation programs.St. Paul, MN. Available at www.health.state.mn.us!ommh/projects!autism!index.cfm.

E. G., & Scotch, N, A. (1965. April). Sociocultural factorsin the epidemiology of schizophrenia: a review, InternationalJOllrnal ofPsychiatry, 1, 258-305.

c.. & Pena, J. A. (2008). Epidemiological findingsof pervasive developmental disorders in a Venezuelan study.Alltism, 12(2). 191-202,

:Morton. R.. Sharma, V.• Nicholson, I., Broderick, M.• & Poyser, J.(2002). Disability in children from different ethnic populations.Child: Care, Health. and Development. 28(1), 87-93.

National Population and Family Planning Commission of thePeople's Republic ofChina. (20G9.March 9). Available at http://www.chinapop.gov.cn!wxzllrkgkJ200903/t20090309_166730.htm Accessed March 16, 2009 (In Chinese).

':National Research Council (Committee on Educational Interventionsfor Children with Autism). (2001). Educating children withautism.Washington. DC: National Academies Press.

C. I., Falb, M. D,. & Gurney, 1. G. (2005), Nationalautism prevalence trends from United States special educationdata. Pediatrics. 115. 277-282.

(1998). Culture and langllage development: Language acquisi-tion and language socialization in a Samoan village. Cambridge:Cambridge University Press.

& Schieffelin. B. (1984). language acquisition andfion: Three developmental stories. In R Shweder & R. leVine,

(Eds.), Culwre theory: Mind, self, and emotion (pp. 263-301).Cambridge: Cambridge University Press.

Offord, D. R.• Boyle, M. H .• Szatmari. P., Rae-Grant. N, 1.. Links,P. S,. Cadman, D. T., et al. (1987). Ontario Child HealthStudy: 1. Six-month prevalence of disorder and rates of serviceutilization. Archives ofGeneral Psychiatry, 44, 832-836.

Olivera, G., A., Marques, C, Miguel, T, S., Coutinho,A. M., Mota-Vieira, 1., & Vicente, A. M. (2007). Epidemiologyof autism spectrum disorder in Portugal: prevalence, clini-cal characterization, and medical conditions. DevelopmentalMedicine and Child Neurology. 49(10). 726-733.

Olusanya. B. O. (2007). Promoting effective interventions forneglected health conditions in developing countries. Disabilityand Rehabilitation, 973-976.

Petersen, I. (2004). Primary level psychological services in SouthAfrica: can a new psychological professional fill the gap?Health,Policy, and Planning, 19(1), 33-40.

Philippe, A.,Martinez,M., Guilloud-Bataille.M.•Gillberg.C,Rastam,M.,.Sponheim. E., & Leboyer,M. (1999). Genome-wide scan forautism .susceptibility genes. Paris Autism Research InternationalSibpair Study, Human iYfolecular Genetics, 8(5), 805-812.

Polanczyk, G.• de Lima, M., Horta, B., Biederman, J. & Rohde, 1.(2007). The worldwide prevalence ofADHD: a systematic reviewand metaregression analysis. American JOllrnal of Psychiatry,16(6),9'12-948.

Powell. J. E.. Edwards. A.. Edwards, .M., Pandit, B. 5.• Sungum-Paliwal, S. R.• & Whitehouse. W. (2000). Changes in the inci-dence ofchildhood autism and other autism spectrum disordersin preschool children from two areas of the West Midlands, UK.Developmental J.'vlediclne and Child Nellrology, 42, 624-628.

Probst, P. (1998). Child health-related cognitions of parents withautistic children: A cross-national exploratory study. In U. P.Gielen andA L. Comunian (Eds.), The familyandfamily therapyin international perspective (pp. 461-483). Trieste: Lint.

Rogers. S. J. (1998). Empirically supported comprehensive treat-ments for young children with autism. Journal ofClinical Childand Adolescent Psychology, 27, 167-178.

Rogers. S. J.• & Vismara. L. A. (2008). Evidence-basedsive treatments for early autism, Journal of Clinical Child andAdolescent Psychology. 37( 0.8-38.

Rothman. K. J., & Greenland, S. (1998). Measures of disease fre-quency. In K. I. Rothman & S. Greenland (Eds.).Modernmiology (pp, 29-64). Philadelphia: Lippincott-Raven.

Ruiz, D. S. (1982). Epidemiology of schizophrenia: some diagnosticand sociocultural considerations. Phylon, 43(4), 315-326.

Rutter. }.:1" Cox. A.. Tupling, c., Berger. M., & Yule, M. (1975).Attainment and adjustment in two geographical areas: I. Theprevalence of psychiatric disorder. British Journal ofPsych iatry,126,493-509.

Rutter, M., Le Couteur, A. & Lord. C. (2003), i'vfanual for the ADI-WPS version. 1'os Angeles: Western Psychological Services.

Rydelius. P.-A. (2005). Sweden and other Nordic nations. InF. R. Volkmar. R. Paul.A. Klin, & D. Cohen (Eds.).Handbook ofalltism and pervasive developmental disorders (3rd ed.• pp,1243). New York: Wiley.

Sanua. V. D. (1984). Is infantile autism a universal phenomenon?An open question International Journal of Social Psychiatry.30(3),163-174.

Sartawi, A. M, (1999). Educational and behavioural characteristicsof autistic children in the United Arab Emirates. InternationalJournal ofRehabilitation Research, 22(1), 337-339.


Schieffelin, B, B. (2005). The give and take of everyday life: Languagesocialization ofKalult" children. Tucson: Fenestra.

Schopler, E., Reichler, R. J., & Brenner, B. R, (1988), The ChildhoodAutism Rating Scale (CARS). Los Angeles:Western PsychologicalServices.

Shelton, J. F" Tancredi, D. J" &Hertz-Picciotto, I. (2010). Independentand dependent contributions of advanced maternal andnal ages to autism risk. Autism Research, 3, 30--39.

Shin, Y., Lee, K., Min,S., & Emde, R. N. (1999). A Korean syndromeof attachment disturbance mimicking symptoms of pervasivedevelopmental disorder. Infant Mental Health journal, 20(1),60-76.

Skellern, C. M., McDowell, M., & ScWuter, P. (2005). Diagnosis ofautism spectrum disorders in Queensland: variations in prac-tice. journal ofPediatrics andChild Health, 41, 407-412.

Spinney, 1. (2007). Therapy for autistic children causes outcry inFrance. Nature, 370, 645-646.

Stone, W. 1. (1987). perspectives on autism.Journal ofPediatric Psychology, 12, 615-630.

Tao, K" & Yang, X. (2005), China. In F. R. Volkmar, R. Paul,A. KEn, & D. Cohen (Eds.), Handbook of autism and pervasivedevelopmeutal disorders (3rd ed., pp. 1203-1206). New York:Wiley.

Thara, R, Padmavati, R., & Srinivasan, T. N. (2004). Focus onpsychiatry in India. British journal ofPsychiatry, 184, 366-373,

Thorburn, M. J., Desai, P., Paul, T. J., Malcolm, L, Durkin, M., &Davidson, L. (1992). Identification of childhood disabilityin Jamaica: the ten question screen. International Journal ofRehabilitation Research, 15, 115--127.

U.S. Department ofHealth and Human Services (USDHHS). (1999).Mental health: A report of the Surgeon General. Rockville, MD:U.S. Department of Health and Human Services, SubstanceAbuse and Mental Health Services Administration, Center forMental Health Services, National Institutes ofHealth, NationalInstitute ofMental Health.

van Engeland, H. (2005). The Netherlands. In F. R. Volkmar, R.Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism andpervasive developmental disorders (3rd ed., pp. 1233-1235).NewYork: Wiley.

Vogel, W., & Holford, 1. (1999). Child psychiatry in Johannesburg,South Africa: a descriptive account of cases presenting at twodinics in 1997. European Child and Adolescent Psyc1liatry, 8,181-188.

Whaley, A. L. (2001). Cultural mistrust and the clinical diagnosis ofparanoid schizophrenia in African American patients,follrnal ofPsychopathology and Behavioral Assessment, 23(2), 93-100.

Williams, K., Glasson, E. J., Wray, J., Tuck, M., Helmer, M., Bower,C. I., et a1. (2005). Incidence of autism spectrum disorders inchildren in two Australian states. Medical Journal of Australia,182(3), lOB-ill.

Wong, V. C. N., & Hui, S. 1. H. (2008). Epidemiological study ofautism spectrum disorder in China. Journal ofChild Neurology,23(1),67-72-

World Health Organization. (2001). International classification offunctioning, disability, and health. Geneva: WHO.

M., & Boyle, C. (2002). Overview: the epidemiol-ogy of neurodevelopmental disorders. Mental Retardation andDevelopmental Disabilities Research Reviews, 8, 113-116.

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