Screening for Autism Spectrum Disorder in Low- and Middle-Income Countries: A Systematic Review

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Title: Screening for Autism Spectrum Disorder in Low- and Middle-Income Countries: A Systematic Review
Language: English
Authors: Stewart, Lydia A., Lee, Li-Ching
Source: Autism: The International Journal of Research and Practice. Jul 2017 21(5):527-539.
Availability: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://sagepub.com
Peer Reviewed: Y
Page Count: 13
Publication Date: 2017
Document Type: Journal Articles
Reports - Research
Information Analyses
Descriptors: Foreign Countries, Autism, Pervasive Developmental Disorders, Screening Tests, Developing Nations, Use Studies, Research Design, Evaluation Methods, Clinical Diagnosis, Community Programs, Cultural Context, Cultural Relevance, Guidelines, Psychometrics, Check Lists, Child Behavior, Rating Scales, Stakeholders
Geographic Terms: Africa, Asia, Europe, Uganda, Kuwait, Oman, Qatar, Saudi Arabia, Jordan, Lebanon, Syria, Egypt, Tunisia, Iran, Turkey, Sri Lanka, India, Taiwan, China, Brazil, Mexico
Assessment and Survey Identifiers: Child Behavior Checklist
DOI: 10.1177/1362361316677025
ISSN: 1362-3613
Abstract: This review contributes to the growing body of global autism spectrum disorder literature by examining the use of screening instruments in low- and middle-income countries with respect to study design and methodology, instrument adaptation and performance, and collaboration with community stakeholders in research. A systematic review was conducted to understand the use of autism spectrum disorder screening instruments in low- and middle-income countries from studies published between 1992 and 2015. This review found that 18 different autism spectrum disorder screeners have been used in low- and middle-income settings with wide ranges of sensitivities and specificities. The significant variation in study design, screening methodology, and population characteristics limits the ability of this review to make robust recommendations about optimal screening tool selection. Clinical-based screening for autism spectrum disorder was the most widely reported method. However, community-based screening was shown to be an effective method for identifying autism spectrum disorder in communities with limited clinical resources. Only a few studies included in this review reported cultural adaptation of screening tools and collaboration with local stakeholders. Establishing guidelines for the reporting of cultural adaptation and community collaboration procedures as well as screening instrument psychometrics and screening methodology will enable the field to develop best practices for autism spectrum disorder screening in low-resource settings.
Abstractor: As Provided
Number of References: 35
Entry Date: 2017
Accession Number: EJ1144870
Database: ERIC
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  Value: <anid>AN0123635328;f9d01jul.17;2017Jun19.08:05;v2.2.500</anid> <title id="AN0123635328-1">Screening for autism spectrum disorder in low- and middle-income countries: A systematic review </title> <p>This review contributes to the growing body of global autism spectrum disorder literature by examining the use of screening instruments in low- and middle-income countries with respect to study design and methodology, instrument adaptation and performance, and collaboration with community stakeholders in research. A systematic review was conducted to understand the use of autism spectrum disorder screening instruments in low- and middle-income countries from studies published between 1992 and 2015. This review found that 18 different autism spectrum disorder screeners have been used in low- and middle-income settings with wide ranges of sensitivities and specificities. The significant variation in study design, screening methodology, and population characteristics limits the ability of this review to make robust recommendations about optimal screening tool selection. Clinical-based screening for autism spectrum disorder was the most widely reported method. However, community-based screening was shown to be an effective method for identifying autism spectrum disorder in communities with limited clinical resources. Only a few studies included in this review reported cultural adaptation of screening tools and collaboration with local stakeholders. Establishing guidelines for the reporting of cultural adaptation and community collaboration procedures as well as screening instrument psychometrics and screening methodology will enable the field to develop best practices for autism spectrum disorder screening in low-resource settings.</p> <p>autism spectrum disorder; global autism research; low- and middle-income countries; screening</p> <p>This decade has seen more epidemiologic studies of autism spectrum disorder (ASD) in low- and middle-income countries (LMICs). The World Bank classifies a country as middle-income economy if the gross national income (GNI) per capita is less than US$12,475 and a low-income economy if GNI is US$1075 or less. A recent review of epidemiologic studies of ASD reported a median global prevalence of 62 cases per 10,000 individuals (review in [<reflink idref="bib5" id="ref1">5</reflink>] ); however, the majority of the studies reviewed came from the high-income nations that contributed to the formative research on ASD such as the United States and the United Kingdom. Of the 69 studies reviewed, only 17 were set in low- or middle-income countries. While these 17 studies represent a marked increase from the single study reviewed by [<reflink idref="bib6" id="ref2">6</reflink>] a decade earlier, more investment in autism research in low-resource settings is needed.</p> <p>In order to conduct the research needed to advance the study of ASD epidemiology and inform policy internationally, study methodology and measurements must accurately reflect the unique cultural and resource considerations of the community of interest. The majority of epidemiologic studies of ASD in LMICs use instruments developed and validated in high-income countries in a multi-stage protocol that includes both parent-complete screening assessments, such as the Social Responsiveness Scale (SRS), and clinical diagnostic tools, such as the Autism Diagnostic Observation Schedule (ADOS; review in [<reflink idref="bib5" id="ref3">5</reflink>] ). Assessing all children for ASD in a clinical setting is not logistically or economically feasible in many low-resource settings due to a lack of healthcare resources, limited awareness of ASD among clinical professionals and families, as well as financial and geographic barriers to accessing care. Caregiver-report screening remains an efficient and adaptable option for the initial assessment of ASD in low-resource populations. However, recent studies suggest that cultural and socio-economic variability exist in the perception of the behaviors measured on these screeners as well as in performance of screener items (review in [<reflink idref="bib23" id="ref4">23</reflink>] ; [<reflink idref="bib28" id="ref5">28</reflink>] ).</p> <p>A highly informative systematic review by [<reflink idref="bib28" id="ref6">28</reflink>] reports efforts to culturally adapt ASD screening tools for use outside of the cultures in which they were first developed. According to this review, only 21 studies were located which reported engaging in cultural adaptation, with eight originating in an LMIC. The review authors found limited reporting of adaptation protocols and a lack of adherence to established guidelines as well as differences in psychometric properties of screeners between original and adapted versions.</p> <p>Building on the work of Soto et al., this review seeks to determine the extent to which screening instruments have been used for detecting cases of ASD in LMICs as well as to define the screening methodologies used to date. Analysis of reviewed studies will allow for the synthesis of best practices for future screening initiatives in LMICs. This review will (<reflink idref="bib1" id="ref7">1</reflink>) contribute to the growing body of global autism literature by further examining the use of ASD screening instruments specifically in LMICs—including studies both with and without cultural adaptation, (<reflink idref="bib2" id="ref8">2</reflink>) examine variation in study design and screening methodology across LMIC studies, and (<reflink idref="bib3" id="ref9">3</reflink>) provide the first examination of reported collaboration with community stakeholders in LMIC ASD screening to date.</p> <hd id="AN0123635328-2">Methods</hd> <p>This review was conducted on published peer-reviewed journal articles listed in PubMed and PsycINFO. In PubMed, all the search included the following: (<reflink idref="bib1" id="ref10">1</reflink>) Medical Subject Headings (MeSH) terms for autism spectrum disorder and pervasive developmental disorder (PDD), (<reflink idref="bib2" id="ref11">2</reflink>) a list of World Bank–defined low- and middle-income country names, and (<reflink idref="bib3" id="ref12">3</reflink>) key words for study type including a MeSH term for prevalence as well as “screen,” “method,” “checklist,” “case identification,” “detection,” and “questionnaire.” In PsycINFO, diagnosis-specific MeSH terms were deconstructed into “autism spectrum disorder” or “developmental disorder” and included along with individual country names and the term “screen.”</p> <p>In order to be included in the review, studies had to meet the following inclusion criteria: (<reflink idref="bib1" id="ref13">1</reflink>) used or adapted a level one or two ASD screeners for purpose of identifying possible ASD, (<reflink idref="bib2" id="ref14">2</reflink>) study populations were located in an LMIC as defined by the World Bank, and (<reflink idref="bib3" id="ref15">3</reflink>) were published in English between 1990 and 2015. During the initial abstract review, studies were excluded if they did not meet the first and second inclusion criteria. Full-text review was conducted on the remaining articles, and studies were excluded if they were not published full text in English or were found to not meet the first two criteria upon further examination. Processes of this systematic review are presented in Figure 1.</p> <p>Systematic review process.</p> <hd id="AN0123635328-3">Results</hd> <p>A total of 28 studies met inclusion criteria and were included in this review. Of the 28, 2 studies were conducted in low-income countries and 26 were conducted in middle-income countries. Study populations ranged from children aged 18 months to adults. Among these 28 studies, 18 different screening instruments were used. Study design and screening administration method varied widely across studies. Findings are organized by geographic location and summarized in [<reflink idref="bib1" id="ref16">1</reflink>] . [<reflink idref="bib2" id="ref17">2</reflink>] reports screening instrument cutoff scores, sensitivities, and specificities.</p> <hd id="AN0123635328-4"> Studies using ASD screening tools in low- and middle-income countries (LMICs).</hd> <ct id="AN0123635328-5"></ct> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /></colgroup><tr><th align="left">Publication</th><th align="left">Instrument</th><th align="left">Psychometrics</th><th align="left">Sample</th><th align="left">Location</th></tr><tr><td colspan="5">Sub-Saharan Africa</td></tr><tr><td> Khan and Hombarume (1996)</td><td>ABC</td><td>Sensitivity and specificity not reported</td><td>8–17 years n = 18 School-based</td><td>Zimbabwe: Harare, Bulawayo, Gweru</td></tr><tr><td> Kakooza-Mwesige et al. (2014)</td><td>23Q (Ugandan adaptation of 10Q)</td><td>Sensitivity: 0.68 with moderate CI included Sensitivity: 0.80 with moderate CI excluded Specificity: 0.77</td><td>2–9 years n = 1169 Community-based ample</td><td>Uganda: Kampala and Wakiso districts</td></tr><tr><td colspan="5">Middle East and North Africa</td></tr><tr><td> Seif Eldin et al. (2008)</td><td>M-CHAT</td><td>Sensitivity: 0.86 Specificity: 0.80</td><td>18–36 months n = 228 Population-based</td><td>Egypt, Kuwait, Jordan, Lebanon, Oman, Qatar, Saudi Arabia, Syria, Tunisia</td></tr><tr><td> Hussein et al. (2012)</td><td>GARS</td><td>Sensitivity and specificity not reported</td><td>2–15 years n = 123 Clinical-based</td><td>Egypt: Cairo</td></tr><tr><td> Samadi et al. (2012)</td><td>SCQ</td><td>Sensitivity and specificity not reported</td><td>5–6 years n = 1.32 million Population-based</td><td>Iran</td></tr><tr><td> Samadi and McConkey (2014)</td><td>GARS</td><td>Sensitivity: 0.96 Specificity: 1.00</td><td>3–22 years n = 658 Clinical-based cases and school-based controls</td><td>Iran: Tehran, Alborz, Khorasan Tazavi, Western Azerbaijan</td></tr><tr><td> Yousefi et al. (2015)</td><td>GARS-2 ABC</td><td>Not reported Sensitivity: 0.97 Specificity: 0.95</td><td>4–10 years n = 184 Clinical-based cases and school-based controls</td><td>Iran: Tehran</td></tr><tr><td> Samadi and McConkey (2015)</td><td>M-CHAT Hiva</td><td>Sensitivity: 0.90 Specificity: 0.82 Sensitivity: 1.00 Specificity: 0.97 PPV: 0.38</td><td>2–5 years n = 2941 Population-based</td><td>Iran: Mahabad</td></tr><tr><td colspan="5">Europe and Central Asia</td></tr><tr><td> Kara et al. (2014)</td><td>M-CHAT CARS</td><td>Sensitivity and specificity not reported Sensitivity and specificity not reported</td><td>18–36 months n = 618 Clinical-based</td><td>Turkey: Istanbul</td></tr><tr><td colspan="5">South Asia</td></tr><tr><td> Perera et al. (2009)</td><td>M-CHAT</td><td>Sensitivity: 0.25 Specificity: 0.77</td><td>18–24 months n = 374 Community-based</td><td>Sri Lanka</td></tr><tr><td> Juneja et al. (2010)</td><td>ABC</td><td>Cutoff: 67 Sensitivity: 0.78 Cutoff: 53 Sensitivity: 0.90 Cutoff: 49 Sensitivity: 0.94 Cutoff: 45 Sensitivity: 0.98 Specificity not reported</td><td>Mean age: 3.84 years n = 51 Clinical-based</td><td>India</td></tr><tr><td> Rudra et al. (2014)</td><td>SCDC AQ SCQ</td><td>Sensitivity and specificity not reported</td><td>4–7 years n = 352 Community-based</td><td>India: Kolkata and Delhi</td></tr><tr><td> Nair et al. (2014)</td><td>CARS</td><td>Sensitivity and specificity not reported</td><td>Mean age 42 months n = 623 Clinical-based</td><td>India: Kerala</td></tr><tr><td> George et al. (2014)</td><td>CARS</td><td>Cutoff: 30 Sensitivity: 0.91 Specificity: 0.62 PPV: 0.80 Cutoff: 33 Sensitivity: 0.68 Specificity: 0.74 PPV: 0.82</td><td>Age 2–6 years n = 200 Clinical-based</td><td>India: Kerala</td></tr><tr><td colspan="5">East Asia Pacific</td></tr><tr><td> Wignyosumarto et al. (1992)</td><td>Bryson’s Screening Scale</td><td>Sensitivity and specificity not reported</td><td>School age n = 5120 Community-based</td><td>Indonesia: Yogyakarta</td></tr><tr><td> Chang et al. (2003)</td><td>Autism Spectrum Disorder in Adults Screening Questionnaire</td><td>Sensitivity and specificity not reported</td><td>15–93 years n = 660 Clinical-based</td><td>Taiwan</td></tr><tr><td> Zhang and Ji (2005)</td><td>CABS-CV</td><td>Sensitivity and specificity not reported</td><td>2–6 years n = 7345 Population-based</td><td>China: Tianjin</td></tr><tr><td> Guo et al. (2011)</td><td>ASSQ-CV</td><td>Sensitivity: 0.95 Specificity: 0.82</td><td>23 months–21 years n = 285 Clinical-based</td><td>China: Beijing</td></tr><tr><td> Wang et al. (2012)</td><td>SRS-CV</td><td>Cutoff: 87 Sensitivity: 0.66 Specificity: 0.90 Cutoff: 85 Sensitivity: 0.66 Specificity: 0.89 Cutoff: 65 Sensitivity: 0.94 Specificity: 0.70</td><td>4–6 years n = 307 Clinical-based</td><td>Taiwan: Taipei</td></tr><tr><td> Huang et al. (2014)</td><td>Questionnaire based on CHAT</td><td>Sensitivity and specificity not reported</td><td>18–36 months n = 8000 Clinical-based</td><td>China: Tianjin</td></tr><tr><td> Sun et al. (2014)</td><td>CABS CAST</td><td>Sensitivity: 0.58 Specificity: 0.84 Sensitivity: 0.89 Specificity: 0.80</td><td>4–11 years n = 150 Clinical-based</td><td>China: Beijing</td></tr><tr><td> Yang et al. (2015)</td><td>ABC</td><td>Sensitivity and specificity not reported</td><td>Age, kindergartena n = 15,200 Community-based</td><td>China: Shenzhen, Longhua district</td></tr><tr><td> Sun et al. (2015)</td><td>CAST</td><td>Sensitivity: 0.84 Specificity: 0.96</td><td>6–10 years n = 737 Clinical-based</td><td>China: Beijing</td></tr><tr><td colspan="5">Latin America</td></tr><tr><td> Duarte et al. (2003)</td><td>CBCL</td><td>Comparison to controls with psychiatric conditions Sensitivity: 0.71 Specificity: 0.48 Comparison to neurotypical controls Sensitivity: 0.82 Specificity: 0.85</td><td>4–11 years n = 101 Clinical-based</td><td>Brazil: Sao Paulo</td></tr><tr><td> Marteleto and Pedromonico (2005)</td><td>ABC</td><td>Cutoff: 49 Sensitivity: 0.91 Specificity: 0.92 Cutoff: 68 Sensitivity: 0.58 Specificity: 0.95</td><td>Average age 7 years 5 months n = 133 Clinical and community</td><td>Brazil: Sao Paulo</td></tr><tr><td> Hedley et al. (2010)</td><td>CARS ADEC-SP</td><td>Sensitivity and specificity not reported Phase 1 (cutoff 11) Sensitivity: 0.79 Specificity: 0.88 Phase 2 (cutoff 11) Sensitivity: 0.76 Specificity: 1.00 Phase 3 (cutoff 11) Sensitivity: 0.94 Specificity: 1.00</td><td>15–73 months n = 115 total Clinical-based</td><td>Mexico: Mexico City</td></tr><tr><td> Paula et al. (2011)</td><td>ASQ</td><td>Sensitivity and specificity not reported</td><td>7–12 years n = 1470 Clinical and Community</td><td>Brazil: Atibaia</td></tr><tr><td> Fombonne et al. (2012)</td><td>SRS</td><td>Parent-report SRS Cutoff: 61 Sensitivity: 0.92 Specificity: 0.92 Teacher-report SRS Cutoff: 61 Sensitivity: 0.93 Specificity: 0.84</td><td>5–15 years n = 563 Clinical-based cases and school-based controls</td><td>Mexico</td></tr></table> </ephtml> </p> <p>-1 ABC: Autism Behavior Checklist; 23Q: Twenty-Three Questions; M-CHAT: Modified Checklist for Autism in Toddlers; GARS: Gilliam Autism Rating Scale; SCQ: Social Communication Questionnaire; CARS: Childhood Autism Rating Scale; SCDC: Social Communication Disorder Checklist; AQ: Autism Spectrum Quotient; CABS-CV: Clancy Autism Behavior Scale—Chinese Version; ASSQ-CV: Autism Spectrum Screening Questionnaire—Mandarin Chinese Version; SRS-CV: Social Responsiveness Scale—Chinese Version; CAST: Childhood Autism Spectrum Test—Mandarin Version; CBCL: Child Behavior Checklist; ADEC-SP: Autism Detection in Early Childhood; ASQ: Autism Screening Questionnaire; SRS: Social Responsiveness Scale; CI: confidence interval; PPV: positive predictive value; ASD: autism spectrum disorder.</p> <p>-2 Sensitivity: ability of an instrument to correctly identify those with the outcome of interest, expressed as a proportion.</p> <p>-3 Specificity: ability of an instrument to correctly identify those without the outcome of interest, expressed as a proportion.</p> <p>-4 Case status cutoff: score on the screening instrument at which the participant is considered a positive case at risk for having ASD.</p> <hd id="AN0123635328-6"> Reported psychometric properties of screening instruments.</hd> <ct id="AN0123635328-7"></ct> <p> <ephtml> <table><colgroup><col align="left" /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /><col align="char" char="." /></colgroup><tr><th align="left">Screening instrument</th><th align="left">Sensitivity</th><th align="left">Specificity</th><th align="left">Case status cutoff</th><th align="left">Country</th></tr><tr><td>ABC</td><td>0.97 0.98 0.94 0.90 0.78 0.58</td><td>0.98 – 0.92 – – 0.95</td><td>25 45 49 53 67 68</td><td>Brazil, India, Zimbabwe, Iran</td></tr><tr><td>ADEC</td><td>0.79–0.94 Across all three study phases</td><td>0.88–1.00 Across all three study phases</td><td>11</td><td>Mexico</td></tr><tr><td>AQ</td><td>Not reported</td><td>Not reported</td><td>76</td><td>India</td></tr><tr><td>ASQ</td><td>Not reported</td><td>Not reported</td><td>15</td><td>Brazil</td></tr><tr><td>ASSQ—Mandarin Chinese Version</td><td>0.95</td><td>0.82</td><td>12</td><td>China</td></tr><tr><td>Autism Spectrum Disorder in Adults Screening Questionnaire</td><td>Not reported</td><td>Not reported</td><td>5</td><td>Taiwan</td></tr><tr><td>Bryson’s Screening Scale</td><td>Not reported</td><td>Not reported</td><td>16</td><td>Indonesia</td></tr><tr><td>CBCL</td><td>0.71, 0.82</td><td>0.48, 0.85</td><td>Not reported</td><td>Brazil</td></tr><tr><td>CAST</td><td>0.84, 0.89</td><td>0.80, 0.96</td><td>15</td><td>China</td></tr><tr><td>CHAT</td><td>Not reported</td><td>Not reported</td><td>Fail: A and B pointing item Fail: > 2 Section A or B</td><td>China</td></tr><tr><td>CABS</td><td>0.58</td><td>0.84</td><td>14</td><td>China</td></tr><tr><td>CARS</td><td>0.91 0.68</td><td>0.62 0.74</td><td>30 33</td><td>India, Turkey</td></tr><tr><td>GARS</td><td>0.96</td><td>1.00</td><td>30</td><td>Egypt, Iran</td></tr><tr><td>Hiva</td><td>0.97</td><td>1.00</td><td>3</td><td>Iran</td></tr><tr><td>M-CHAT</td><td>0.25 0.86, 0.90 Not reported</td><td>0.77 0.80, 0.82 Not reported</td><td>Not reported 2 items 3 items</td><td>Sri Lanka, (Kuwait, Jordan, Lebanon, Oman, Qatar, Saudi Arabia, Syria, Tunisia), Turkey Iran</td></tr><tr><td>SCDC</td><td>Not reported</td><td>Not reported</td><td>9</td><td>India</td></tr><tr><td>SCQ</td><td>Not reported</td><td>Not reported</td><td>15</td><td>India, Iran</td></tr><tr><td>SRS</td><td>0.93, 0.92 0.94 0.66 0.66</td><td>0.84, 0.92 0.70 0.90 0.89</td><td>61 65 85 87</td><td>Taiwan, Mexico</td></tr><tr><td>23Q (Ugandan adaptation of 10Q)</td><td>0.68, 0.80</td><td>0.77</td><td>1 or more items, depending on CI</td><td>Uganda</td></tr></table> </ephtml> </p> <p>-5 ABC: Autism Behavior Checklist; ADEC: Autism Detection in Early Childhood; AQ: Autism Spectrum Quotient; ASQ: Autism Screening Questionnaire; ASSQ-CV: Autism Spectrum Screening Questionnaire—Mandarin Chinese Version; CBCL: Child Behavior Checklist; CAST: Childhood Autism Spectrum Test—Mandarin Version; CHAT: Checklist for Autism in Toddlers; CABS: Clancy Autism Behavior Scale; CARS: Childhood Autism Rating Scale; GARS: Gilliam Autism Rating Scale; M-CHAT: Modified Checklist for Autism in Toddlers; SCDC: Social Communication Disorder Checklist; SCQ: Social Communication Questionnaire; SRS: Social Responsiveness Scale; 23Q: Twenty-Three Questions; CI: confidence interval.</p> <hd id="AN0123635328-8">Sub-Saharan Africa</hd> <p>Two community-based studies screening populations in Sub-Saharan Africa were reviewed. The Autism Behavior Checklist (ABC) was used to screen 18 children aged 8–17 years enrolled in special education schools in the Zimbabwean cities of Harare, Bulawayo, and Gweru ([<reflink idref="bib18" id="ref18">18</reflink>] ). In this study, the ABC was completed by a teacher after a period of in-school observation. Screening instrument adaptation beyond translation was not reported.</p> <p>The Twenty-Three Questions (23Q), a Ugandan adaptation of the Ten Questions, was used by [<reflink idref="bib16" id="ref19">16</reflink>] in a sample of 1169 Ugandan children aged 6–9 years. The study authors reported translation and back-translation of the 23Q into the local language, Luganda, before pilot testing the screener in the Mulago National Referral Hospital. The main study was conducted in a cluster sample of households from the urban Kampala district and Rural Wakiso district. The 23Q was administered to caregivers by trained staff in an interview format. A multi-stage design was used to confirm diagnosis ([<reflink idref="bib16" id="ref20">16</reflink>] ). After initial screening, every screen positive child and every third screen negative child were invited for a secondary screening as part of a full medical examination locally. Children screening positive at stage 2 were referred for clinical evaluation and diagnosis at Mulago Hospital. Using a cutoff of failing a single item, sensitivity ranged from 0.68 to 0.80 depending on the authors’ inclusion of the moderate confidence interval in prevalence estimates and 0.77 specificity. Local community leaders and parish mobilizers were included in sample selection and study implementation to maximize community engagement and reduce stigma.</p> <hd id="AN0123635328-9">Middle East and North Africa</hd> <p>Six studies from the region were reviewed. [<reflink idref="bib27" id="ref21">27</reflink>] validated the Modified Checklist for Autism in Toddlers (M-CHAT) in a multi-national sample of nine Arab countries including Kuwait, Oman, Qatar, Saudi Arabia, Jordan, Lebanon, Syria, Egypt, and Tunisia. The study authors report translation, back-translation and inclusion of some measure items written in both regional dialect and classical Arabic to clarify meaning. The M-CHAT was used as a level 1 screener in a sample of 228 children aged 18 months to 10 years and was administered as maternal self-complete. In 2012, Samadi et al. reported on the use of the Social Communication Questionnaire (SCQ) in the obligatory national Iranian screening program of children aged 5–6 years linked to school entry. The method of screener administration was not reported. Cultural adaptation beyond translation was not reported and the authors expressed concern about the sensitivity of SCQ measures for Iranian culture ([<reflink idref="bib26" id="ref22">26</reflink>] ).</p> <p>In 2014, Samadi and McConkey validated the Gilliam Autism Rating Scale (GARS) in a sample of 658 individuals aged 2–22 years from multiple regions in Iran. The study sample included individuals with a diagnosis of ASD or intellectual disability as well as typically developing children from mother and child clinics and local schools. The GARS was translated into Persian by the study authors and piloted with 15 Iranian families of varying socio-economic status (SES) with a child with an existing ASD diagnosis. The GARS was administered to parents as self-complete with written instruction provided and additional assistance available. The study authors suggested detection of ASD among higher functioning individuals or those with a concurrent diagnosis of intellectual disability as a limitation of the GARS. GARS was also used as part of a broader study on child mental health service usage in a clinical-based sample of 123 children aged 2–17 years attending a child psychiatry outpatient clinic in Cairo, Egypt ([<reflink idref="bib14" id="ref23">14</reflink>] ). The study authors did not report GARS administration method or adaptation.</p> <p>[<reflink idref="bib34" id="ref24">34</reflink>] evaluated the validity and reliability of the Persian version of the ABC in a sample of 184 children aged 4–10 years in Tehran. Children with an existing ASD diagnosis were recruited from autism-specific schools and speech therapy clinics in Tehran. Typically developing controls were recruited from local kindergartens and preschools. The ABC and GARS were administered to mothers in an interview format. The results of the ABC were compared to the existing Persian translation of the GARS. The study authors report the use of translation, back-translation and pilot testing of the screener before use in the study population.</p> <p>In 2015, Samadi and McConkey compared the performance of the M-CHAT to the Hiva, a newly developed Iranian screening tool for ASD, in a population-based sample of 2941 children aged 2–5 years in Mahabad, Iran. The Hiva, meaning “wish” in Kurdish, was developed using items from the GARS based on parent and professional identification of the most commonly occurring symptoms of ASD in this population ([<reflink idref="bib25" id="ref25">25</reflink>] ). Participants were recruited through a mix of private and public kindergarten, preschool centers, and clinics. Workshops were provided for staff at the kindergarten, preschool, and clinical sites to educate staff members about the study and provide outreach materials for parents. The M-CHAT and Hiva were administered as parent self-complete. A follow-up caregiver interview to review and clarify the Hiva was conducted for those who had a positive screen on the Hiva. Participants with a positive screen after follow-up interview were referred for clinical evaluation. The Hiva tool had high sensitivity (1.00) and specificity (0.97) in this sample. While the study authors do not describe the process of developing the Hiva, cultural and linguistic characteristics of the Kurdish- and Persian-speaking Iranian population were considered during development.</p> <hd id="AN0123635328-10">Europe and Central Asia</hd> <p>[<reflink idref="bib17" id="ref26">17</reflink>] validated the M-CHAT in a clinical sample of 618 children aged 18–36 months considered at low and high risk for a form of developmental disability in a multi-stage screening design in well-child clinics in Istanbul, Turkey. A total of 80 high-risk children were selected based on referral to the child neurology department for confirmation of a developmental disorder. The low-risk group comprised 538 children attending clinic for well-child examinations. During a pilot phase of the study, the M-CHAT was initially administered as parent self-complete with little guidance, but researchers found a high false-positive rate. For the main study, the M-CHAT was administered to parents as an interview with healthcare staff. All children in the high-risk group and a random sample of low-risk children, regardless of M-CHAT score, were clinically evaluated using Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM-IV) criteria. The study authors did not report cultural adaptation of the screener but did adapt screening methodology to reflect the improved accuracy of the tool when administered as an interview with health workers.</p> <hd id="AN0123635328-11">South Asia</hd> <p>[<reflink idref="bib22" id="ref27">22</reflink>] screened a sample of 374 children aged 18–24 months in a semi-urban region of Sri Lanka using the M-CHAT. All children whose births were recorded and monitored by clinical field staff at the time of sampling were included. A multi-stage case identification process using a set of “Red Flag” criteria was implemented. Mothers were accessed at home and child-welfare clinics and asked about their child’s display of “Red Flag signs” including loss of language, loss of social skills, and eye contact. The origin, adaptation, and validation of the Red Flag criteria were not reported.</p> <p>Children with one or more “Red Flag” item were screened using the M-CHAT as maternal self-complete. The M-CHAT was adapted through translation, back-translation, and modification of items to ensure retention of the original item meaning. Children with one or more “Red Flag” item were also clinically assessed by a child and adolescent psychiatrist in either a clinical or home setting. Researchers reported the M-CHAT to be ineffective for screening for ASD in this population due to unacceptably low sensitivity and specificity. Reported limitations of the M-CHAT in this population include limited cultural relevance of the screener items and inadequacy of the “yes/no” responses as opposed to a broader range of response.</p> <p>[<reflink idref="bib15" id="ref28">15</reflink>] validated the ABC in a sample of 64 children with a diagnosis of ASD in an unspecified tertiary hospital in India. The mean age of the children was 3.84 years with a standard deviation of 1.89 years. The ABC was administered in a clinical setting by a team of researchers. Caregiver involvement in screener administration and cultural adaptation of the screener were not reported.</p> <p>Two studies from a regional referral center in Kerala, India, validated the Childhood Autism Rating Scale (CARS) in clinical samples of children with suspected developmental delay (DD; [<reflink idref="bib8" id="ref29">8</reflink>] ; [<reflink idref="bib20" id="ref30">20</reflink>] ). [<reflink idref="bib20" id="ref31">20</reflink>] assessed accuracy of the CARS severity scores in a clinical sample of 623 children of mean age of 42 months with suspected ASD. Scores on CARS administered by a developmental pediatrician were compared with diagnosis and severity assessment based on DSM-IV criteria by a multidisciplinary team including a clinical psychologist, special educators, and speech therapists. Cultural adaptation of CARS was not reported. Building upon the study by Nair et al., [<reflink idref="bib8" id="ref32">8</reflink>] used the CARS in a clinical sample of 200 children aged 2–6 years and found that the CARS had a high sensitivity and positive predictive value with cutoff of 30. A cutoff of 33 as previously validated in an Indian population produced a lower sensitivity but higher positive predictive value.</p> <p>In Delhi and Kolkata, Rudra et al. conducted the first translation and validation of three common screeners, SCQ, Autism Spectrum Quotient (ASQ), and Social Communication Disorder Checklist (SCDC), into two main regional languages of Hindi and Bengali ([<reflink idref="bib23" id="ref33">23</reflink>] ). The screening tools were translated using local translators and adapted for culturally appropriate references. Bilingual members of the research team evaluated back-translations and the tools were pilot tested in a clinical sample. Researchers report collaboration with Action of Autism—an Autism awareness and activism group—and the Autism Society of West Bengal for recruitment of children with ASD for the validation study. Children without a diagnosis of ASD were recruited for the validation study from the general population through local schools and word of mouth. In a validation of the Bengali-language tools, 188 children aged 4–7 years were screened. Screening tool administration method and setting was not reported. The study authors report that the newly translated and adapted SCQ, ASQ, and SCDC were found to be effective in identifying ASD among children aged 4–7 years.</p> <hd id="AN0123635328-12">East Asia and Pacific</hd> <p>Nine studies screening study populations in this region were reviewed. In Indonesia, [<reflink idref="bib32" id="ref34">32</reflink>] used the CARS and Bryson’s Screening Scale in a two-stage screening design to assess ASD prevalence in a random sample of 5120 Javanese children aged 4–7 years from Yogyakarta. The scales were administered by clinical staff. Cultural adaptation and consideration were not reported.</p> <p>The Clancy Autism Behavior Scale (CABS)—Chinese Version was used as a level 1 screener for a random community sample of 7345 children aged 2–6 years in both urban and rural districts of Tianjin ([<reflink idref="bib35" id="ref35">35</reflink>] ). The CABS was administered as pediatrician-complete in a multi-stage screening design with clinical assessment using DSM-IV criteria to confirm ASD diagnoses. Screener adaptation was not reported.</p> <p>In Taipei, Taiwan, [<reflink idref="bib2" id="ref36">2</reflink>] used the Autism Spectrum Disorder in Adults Screening Questionnaire (ASDASQ) to assess the prevalence of ASD in a clinical sample of 660 adults seeking treatment at an outpatient psychiatric facility in Taipei, Taiwan. The ASDASQ was administered to participants by a clinician and diagnosis was confirmed through clinical interview with child psychiatrists. Screener adaptation was not reported.</p> <p>In Beijing, [<reflink idref="bib11" id="ref37">11</reflink>] validated the Autism Spectrum Screening Questionnaire (ASSQ) in a sample of 285 individuals aged 23 months to 21 years diagnosed with ASD, attention deficit and hyperactivity disorder (ADHD), or schizophrenia sampled from the Institute of Mental Health at Peking University and public schools in Beijing. The ASSQ was administered to parents as self-complete. The study authors report translation, back-translation, and pilot testing of the ASSQ before use.</p> <p>Also in Beijing, [<reflink idref="bib29" id="ref38">29</reflink>] compared the validity of a Mandarin Chinese version of the CABS and Childhood Autism Spectrum Test (CAST) in a clinical sample of 150 children aged 4–11 years. The CAST and CABS were administered as parent self-complete. The CAST was found to have higher validity than the CABS using the ADOS as gold standard. Sun et al. report collaboration with local stakeholders in the study recruitment and implementation process. Local stakeholders mentioned include Beijing China Disabled Persons’ Federation, and a rehabilitation center for ASD in Qingdao was reported.</p> <p>[<reflink idref="bib31" id="ref39">31</reflink>] validated the Mandarin adaptation of the SRS in a sample of 307 children aged 4–6 years in Taipei, Taiwan. Children with a diagnosis of ASD, ADHD, DD, or ADHD + DD were sampled from two hospitals in Taipei. Children without a diagnosis were sampled from kindergartens in Taipei City. The SRS was completed by primary caretakers, including both parents and grandparents.</p> <p>In Tianjin, [<reflink idref="bib13" id="ref40">13</reflink>] screened 8000 children aged 18–36 months using the CHAT. Additional questions were added to the CHAT for this study, including questions about response to name, seeking sound sources, facial expression, and spoken language. Children were sampled through registration with community hospitals. Section A of the CHAT was administered to caregivers as a self-complete. Section B was conducted by physicians and graduate students majoring in child and adolescent health who had undergone training in CHAT administration. Follow-up clinical examinations based on DSM-IV criteria were provided for children who had positive screens.</p> <p>[<reflink idref="bib33" id="ref41">33</reflink>] used the ABC in a population-based study of 15,200 children aged 3–4 years in Longhua district in Shenzhen. Children were recruited from 141 kindergartens in the district with cooperation of school staff and the district Center for Maternal and Child Healthcare Ethics. The Chinese adaptation of the ABC was administered to parents as a self-complete questionnaire. Follow-up parent interview and assessment of children who screened positive was not reported. Psychometric properties of the screener were not reported.</p> <p>[<reflink idref="bib30" id="ref42">30</reflink>] further validated the CAST in a sample of 737 children aged 6–10 years in Beijing. Pilot testing of the CAST was conducted in a sample of 20 children with an ASD diagnosis sampled from the Beijing China Disabled Persons’ Federation database and a state-owned special rehabilitation facility. Controls for the pilot test were selected from mainstream schools. Translation and adaptation were conducted based on the results from the pilot study. For the population-based study, children were recruited through two mainstream primary schools in Xicheng district. The CAST was completed as caregiver self-complete. All children with a score greater than 12, including both borderline and high score groups, and a random sample of children with a negative screen were invited for clinical assessment at the Peking University First Hospital using the ADOS and Autism Diagnostic Interview–revised (ADI-R).</p> <hd id="AN0123635328-13">Latin America</hd> <p>Five studies were reviewed from Brazil and Mexico. The Portuguese version of the Child Behavior Checklist (CBCL) was used in a study of 101 children aged 4–11 years in Sao Paulo, Brazil ([<reflink idref="bib4" id="ref43">4</reflink>] ). Children with ASD diagnosis and children with a diagnosis of a non-ASD psychiatric disorder were sampled from local clinics. Neurotypical controls were selected from two local public schools. Adaptation of the screener is not reported. The CBCL was administered to mothers through an interview with clinical staff.</p> <p>[<reflink idref="bib19" id="ref44">19</reflink>] validated the ABC in a sample of 133 children in São Paulo with a mean age of 7 years 5 months. Children with a previous DSM-IV diagnosis of ASD, children with speech impairment, and typically developing children comprised the study sample. Children were recruited through association with local stakeholder, the Friends of Autism Association, and the Speech Disorders Outpatient Clinic of the Universidade Federal de São Paulo. The ABC was translated and back-translated by researchers, piloted, and then further adapted to colloquial language The ABC was administered as a maternal interview.</p> <p>Hedley et al. validated the Spanish translation of the observation-based Autism Detection in Early Childhood (ADEC) in a clinical sample of 115 children aged 15–73 months from Puebla and Mexico City, Mexico. ADEC Spanish translation process was reported and conducted in accordance with international guidelines for cross-cultural test translation to ensure “linguistic and cultural differences were reasonably accounted for” ([<reflink idref="bib12" id="ref45">12</reflink>] ). The translated tool was reported to have been pilot tested before use in this sample. During the first phase of the study, research staff included therapists, clinical psychologists, and one psychology student. Staff were trained in the use of the ADEC and performed a test observation before evaluating participants. Participants with an ASD diagnosis were recruited from clinics that treat children with developmental disorders. Children without a diagnosis of ASD were recruited as controls from the Piaget school. The observation-based ADEC was compared to parent questionnaire response, DSM-IV-based evaluation, and CARS. During phase 2, children referred to a specialist developmental clinic in Chihuahua, Mexico, between 2006 and 2008 were compared to a sample of controls. ADEC was administered by a clinical psychologist and compared to the ADI-R- and DSM-IV-based evaluation. The ADEC had high sensitivity and specificity as a level 2 screening instrument.</p> <p>The ASQ was used in a study of 1470 children aged 7–12 years suspected of having PDD in Atibaia, Brazil ([<reflink idref="bib21" id="ref46">21</reflink>] ). Children suspected of having PDD were referred to the study by education and healthcare professionals. Screening administration method and cultural adaptation were not reported. The ASQ was used in a study of 1470 children aged 7–12 years suspected of having PDD in Atibaia, Brazil ([<reflink idref="bib21" id="ref47">21</reflink>] ). Children suspected of having PDD were referred to the study by education and healthcare professionals. Screening administration method and cultural adaptation were not reported.</p> <p>In Mexico, [<reflink idref="bib7" id="ref48">7</reflink>] validated the Spanish version of the SRS in a sample of 563 children aged 4–13 years with and without a diagnosis of ASD from the cities of Leon, Merida, Puebla, and Mexico City. Children with an ASD diagnosis were sampled from clinics associated with the nonprofit Mexican Developmental Disorders Clinic CLIMA, previously used for recruitment in the study by Hedley et al. Typically developing children were selected from public and private schools in Leon and Merida. The participants’ caregivers and teachers self-completed the SRS. Cultural adaptation was not reported.</p> <hd id="AN0123635328-14">Discussion</hd> <p>Among the 28 studies reviewed, 18 different screening instruments were used with a wide range of sensitivities and specificities. The significant variation in study design, screening methodology, cutoff of screening positives, and population characteristics limits the ability of this review to make robust recommendations about optimal screening tool selection. Discussion is divided into sections on (<reflink idref="bib1" id="ref49">1</reflink>) study design and methodology, (<reflink idref="bib2" id="ref50">2</reflink>) screening instrument performance and administration method, and (<reflink idref="bib3" id="ref51">3</reflink>) collaboration with local stakeholders.</p> <hd id="AN0123635328-15">Study design and methodology</hd> <p>Studies exhibited wide variation in study design and screening methodology. The majority of studies were cross-sectional, assessing the prevalence of ASD in the study sample at a single time point. Among these studies, multi-stage case identification employing both screening instruments and later diagnostic assessment was common. Across studies, the same screening instruments were applied both to “high-risk” children with suspected developmental disability and children in the general population with no suspected disability. This is potentially problematic as screening tools, such as the M-CHAT, are designed to be administered to the general population as a level 1 screener while other tools, such as CARS, are better suited to examine severity and distinguish ASD from other forms of disability in samples with higher risk of ASD or other suspected impairment.</p> <p>Case–control was the most common study design among studies validating screening instruments. In these validation studies, there was variation in selection of control groups. Studies compared screener performance among children with an established ASD diagnosis to that of a control group of their typically developing peers and/or children with a non-ASD developmental disability. Given the heterogeneity of behaviors and traits on the spectrum as well as common co-occurrence of ASD with other types of developmental disability, it is essential that studies seeking to validate screening instruments compare performance to both neurotypical and non-ASD developmental disability control groups. The use of both typically developing and developmental disability control groups will allow for more rigorous examination of screening instrument ability to identify ASD in low-resource populations that may also experience a high burden of childhood disability and overall poor health.</p> <p>The majority of studies screened children in a clinical setting and sampled from the existing patients or school-attendees. While this approach may prove effective in settings where access to healthcare and education is widely available, community-based assessment as demonstrated in Ugandan, Sri Lankan, Indian, and Chinese study populations may be better suited to lower resource settings ([<reflink idref="bib16" id="ref52">16</reflink>] ; [<reflink idref="bib22" id="ref53">22</reflink>] ; [<reflink idref="bib35" id="ref54">35</reflink>] ). Community-based studies offer the opportunity to identify individuals with symptoms across a wider spectrum, whereas clinical-based studies to some extent are limited to a selective sample who seek care at the study clinics and possibly experience more prominent clinical concerns. In addition, access to healthcare providers who are capable of diagnosing and treating individuals with ASD can be very limited in LMICs, posing significant financial and geographic barriers for families. In order to derive a cutoff that can screen for “true” cases, rather than selective cases who were present at a clinical setting, community-based studies of ASD are not only preferable but also needed.</p> <p>In the studies reviewed, screening instruments were completed by a range of informants including parents, teachers, caretakers, and clinical staff. Mothers were the most often reported respondent, followed by “parent.” [<reflink idref="bib24" id="ref55">24</reflink>] reported that 24% of their sample had both parents as informants and only 10% were assessed by fathers only. In the Taiwanese study by [<reflink idref="bib31" id="ref56">31</reflink>] , 24% children were scored on the SRS by a non-parental or unspecified caretaker. Further research is needed into possible discrepancies between maternal versus paternal report and parental versus non-parental caretaker report. In cultures where multi-generational households are common, the combination of report by both parents and/or other familial adults in the household may provide more accurate information of child behavior.</p> <p>Age plays a key role in screening instrument selection as many tools are designed for specific windows in development. Several studies reviewed here reported use of a single screening instrument for a wide range of ages, which limits the validity of the results. The 2003 study by Chang et al. in Taipei was the only study of ASD prevalence solely in an adult population. While this study is innovative in its selection of an adult population, it is limited by the inclusion of only a clinical sample of adults already seeking treatment for mental illness, which potentially includes adults who have more symptoms of ASD than would a sample of the general population. More research is needed into the assessment of ASD in adult populations within and outside of residential psychiatric institutions globally. To address the lack of research on adult screening, future studies should assess the utility of integrating ASD screening with primary care visits and as part of social services contact with families.</p> <hd id="AN0123635328-16">Use of screening instruments</hd> <p>Across the studies that discussed strengths and limitations to screener administration methods, there was a slight preference for interaction with screening staff rather than an unassisted self-complete format. This mainly was due to study populations’ lack of familiarity with the developmental milestones addressed in screeners or the wording of items, lower research literacy, and lower literacy level. Response format may also present a challenge for study populations unfamiliar with Likert-scale measurements or in cultures where answers with scaled gradation, as seen on the SRS, are more socially desirable than stark “yes/no” responses, as seen on the SCQ.</p> <p>The decision to administer a screener in an interview format may affect the time it takes to administer a tool. Some tools, such as the M-CHAT, are designed to take less than 10 min while more length screeners such as the SRS and SCQ can range in administration time from 10 to 20 min. Few studies reported administration times. Future studies should discuss in detail the chosen method of screener administration, time taken to administer, and level of training of the interviewer when applicable to begin to generate best practices.</p> <p>[<reflink idref="bib2" id="ref57">2</reflink>] shows a wide range of cutoff points, sensitivities, and specificities within screening instruments across studies reviewed. There is a significant variation between the cut-points selected for the same tools across studies, independent of study sample age or study design. Sensitivity and specificities range from excellent to poor for instruments like the M-CHAT and ABC. Reporting of cutoff scores for a positive screen as well as sensitivity and specificity of instruments was not uniform across studies. As more studies are conducted in populations in which there are no histories of screening, it is essential that culturally optimal cutoff points be established and reported to standardize screening efforts.</p> <p>In response to [<reflink idref="bib28" id="ref58">28</reflink>] conclusion that few studies adhered to established cultural adaptation procedures, this review defined cultural adaptation more loosely than the [<reflink idref="bib10" id="ref59">10</reflink>] guidelines used by Soto so as to best capture formal and informal cultural adaptation practices. Studies were considered to have engaged in cultural adaptation if they undertook activities to reflect the beliefs, practices, and resources of the community under study in the study design, screening methodology, or screening tool content and administration. Few studies reported formal adaptation procedures. While translation of screening instruments was widely reported, only four reported engaging in cultural adaptation of the screening instrument or methods. Types of cultural adaptation reported include the inclusion of culturally relevant activities in screening items such as children’s game and festivals and development of screening methodology around cultural beliefs and practices. Cultural adaptation procedures and participants were not uniformly reported across studies, a problem also reported by [<reflink idref="bib28" id="ref60">28</reflink>] .</p> <hd id="AN0123635328-17">Collaboration with local stakeholders</hd> <p>A trend in reporting cultural adaptation and community collaboration among studies in this review shows that studies published more recently contain more detailed descriptions for adaptation processes and collaboration activities. Collaboration with community organizations was reported by nine studies. Types of organizations engaged in collaboration with researchers include schools, Autism societies and awareness groups, and community health programs. Collaboration with these local experts took several forms across studies reviewed and included consultation of local stakeholders during instrument adaptation, development of sampling strategies, screening implementation, and stigma reduction before screening. The most common type of stakeholder inclusion was use of local experts such as teachers and parents in cultural adaptation of instruments.</p> <p>Collaboration with local stakeholders in qualitative aspects of instrument adaptation is a best practice in public mental health and has been used successfully in other areas of mental health research such as depression and mental distress in low-resource settings like the Democratic Republic of the Congo and rural Vietnam ([<reflink idref="bib1" id="ref61">1</reflink>] ; [<reflink idref="bib9" id="ref62">9</reflink>] ). This approach has been shown to be effective in the Autism field as well. In the development of the Parent-mediated Intervention for Autism Spectrum Disorder in South Asia (PASS), qualitative methods involving semi-structured interviews with local parents and teachers were an important step in obtaining a locally relevant communication development and play behaviors as well as an understanding of potential barriers to delivery ([<reflink idref="bib3" id="ref63">3</reflink>] ). Just as the involvement of local stakeholders was essential in the early development of this culturally relevant and resource feasible intervention, the inclusion of local experts and gatekeepers in adapting or designing screening studies can help researchers avoid known barriers and develop culturally sensitive and resource-efficient studies for their population of interest.</p> <p>In addition to improving cultural relevancy of screening instrument, collaboration with local stakeholders can help researchers design more efficient studies that leverage positive community dynamics. Local stakeholder organizations such as schools and awareness groups can provide insight into the unique experiences of families affected by ASD in the community. As [<reflink idref="bib16" id="ref64">16</reflink>] demonstrated with their community-based study in Uganda, well-known community mobilizers could provide insight into designing efficient sampling strategies and provide a level of familiarity to participants who might otherwise be hesitant to undergo screening. In settings that lack formal services for individuals on the spectrum, community mapping in partnership with local stakeholders may reveal grassroots support structures for families housed within religious or other community programs that can be leveraged to access new populations for screening.</p> <p>Screening is an essential first step in addressing the burden of ASD globally, but it must be coupled with evidence-based intervention if the field is to progress the understanding of ASD in a scientifically rigorous and ethical manner. Research partnerships with local stakeholders developed during a screening study may be expanded upon to create a sustainable pathway for identification, and intervention in communities currently lack a formal pathway for care and services. Few of the community-based studies in this review report training community members to administer screening instruments, rather staff from research and medical institutions traveled to the study sites to conduct screening and data analysis. In an effort to build local research and screening capacity in communities that experience an ASD burden, future research studies should assess the benefits and limitations of training locals to engage in the research study before developing their research strategy.</p> <p>In many low-resource communities, especially rural communities, participation in ASD screening like that outlined in this review may be one of the only health-related encounters a child experiences that year. As such, integration of screening with existing health outreach, such as childhood immunization or nutritional supplementation campaigns, may maximize the health and benefit to underserved populations. Finally, there is a power imbalance implicit in conducting research in low-resource communities that future studies should take into consideration when developing research partnerships. Researchers may wish to utilize community-based participatory research frameworks for future screening efforts in order to ensure that screening and subsequent paired intervention addresses the priorities and concerns of the community as well as those of the research or medical institution.</p> <hd id="AN0123635328-18">Recommendations</hd> <p>This review makes the following recommendations. First, future studies should report when possible psychometric properties of the instruments used as well as detailed descriptions of recruitment and administration methods to help establish best practices for screening in low-resource settings. Second, future studies of ASD in low- and middle-income settings should strive for cultural adaptation beyond translation using the qualitative and quantitative methods successfully employed in studies of other forms of mental illness or disability globally. Third, inclusion of local stakeholders in study design and implementation is a key to improve cultural relevance of the research as well as build local research and screening capacity. Finally, reporting of cultural adaptation and community collaboration procedures as well as screening instrument psychometrics and screening methodology will enable the field to develop best practices for ASD screening in low-resource settings.</p> <p>While screening is an essential first step in defining the burden of ASD globally, it is essential that screening and diagnostic efforts be paired with intervention and parent support opportunities to promote the best outcomes for families receiving a diagnosis. In an acknowledgment of the higher burden of care for children on the spectrum, future studies may wish to examine opportunities for the integration ASD screening via parent-report with parental mental health screening. In addition to providing screening and intervention, public awareness and stigma reduction campaigns should also be considered as part of a comprehensive public health approach to reducing possible negative outcomes such as delays in appropriate treatments and education as well as compromised family quality of life.</p> <hd id="AN0123635328-19">Acknowledgements</hd> <p>The authors thank Dr M Daniele Fallin for her editing support and critique on this review.</p> <hd id="AN0123635328-20">Footnotes</hd> <ref id="AN0123635328-21"> <title>References</title> <blist> <bibl id="bib1" idref="ref7" type="bt">1</bibl> <bibtext>Bass JK, Ryder RW, Lammers M. 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  Data: Screening for Autism Spectrum Disorder in Low- and Middle-Income Countries: A Systematic Review
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  Data: <searchLink fieldCode="AR" term="%22Stewart%2C+Lydia+A%2E%22">Stewart, Lydia A.</searchLink><br /><searchLink fieldCode="AR" term="%22Lee%2C+Li-Ching%22">Lee, Li-Ching</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Autism%3A+The+International+Journal+of+Research+and+Practice%22"><i>Autism: The International Journal of Research and Practice</i></searchLink>. Jul 2017 21(5):527-539.
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  Data: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://sagepub.com
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  Data: 13
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  Data: Journal Articles<br />Reports - Research<br />Information Analyses
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  Data: <searchLink fieldCode="SU" term="%22Child+Behavior+Checklist%22">Child Behavior Checklist</searchLink>
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  Data: 10.1177/1362361316677025
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1362-3613
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: This review contributes to the growing body of global autism spectrum disorder literature by examining the use of screening instruments in low- and middle-income countries with respect to study design and methodology, instrument adaptation and performance, and collaboration with community stakeholders in research. A systematic review was conducted to understand the use of autism spectrum disorder screening instruments in low- and middle-income countries from studies published between 1992 and 2015. This review found that 18 different autism spectrum disorder screeners have been used in low- and middle-income settings with wide ranges of sensitivities and specificities. The significant variation in study design, screening methodology, and population characteristics limits the ability of this review to make robust recommendations about optimal screening tool selection. Clinical-based screening for autism spectrum disorder was the most widely reported method. However, community-based screening was shown to be an effective method for identifying autism spectrum disorder in communities with limited clinical resources. Only a few studies included in this review reported cultural adaptation of screening tools and collaboration with local stakeholders. Establishing guidelines for the reporting of cultural adaptation and community collaboration procedures as well as screening instrument psychometrics and screening methodology will enable the field to develop best practices for autism spectrum disorder screening in low-resource settings.
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  Data: 35
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  Data: 2017
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  Data: EJ1144870
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