Abstract
Objective
In the United States, autism spectrum disorder (ASD) is significantly less diagnosed in Spanish-speaking populations compared to other racial/ethnic groups. Structural barriers such as transportation, insurance, and time have been documented within this population. However, many families also report language as a barrier. The present systematic literature review aims to evaluate research findings on the influence of Spanish language and culture on the ASD screening process.
Method
Five databases were searched using key words relating to the aim of the paper to identify potential articles to review. Inclusion criteria included: (1) sample of participants diagnosed with ASD/being evaluated for ASD, (2) Latinx populations that included Spanish-speaking participants, (3) a reference to language included as a research aim or study outcome, and (5) a focus on the screening process or measures for ASD. A total of 132 articles were initially identified.
Results
After reviewing for inclusion criteria, 22 articles were included. In total, six countries were represented across all included papers. Major themes emerged regarding barriers to care, cultural awareness, translation barriers, intervention, knowledge/awareness, and screener evaluation.
Discussion
Findings indicate that language and sociocultural differences can affect knowledge development, communication within healthcare settings, and result in a limited number of translated resources available for the heterogeneous population of Spanish-speakers.
Keywords: Autism, Spanish language, assessment, evaluation, review
Introduction
Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by impairments in social communication and the presence of stereotyped behaviors, interests, and activities (American Psychiatric Association (APA) 2013). In the United States (U.S.), the average age of ASD diagnosis is four years old (Christensen et al. 2016); however, early diagnosis, which can occur as early as 18 months of age, is critical for prognostic outcomes, as it allows access to interventions targeting language and behavioral development (MacDonald et al. 2014). Consequently, ASD screening procedures have become an important facet of developmental surveillance. The American Academy of Pediatrics (AAP) recommends formal ASD screening at ages 18 and 24 months (Hyman et al. 2020), and an estimated 63% of pediatricians report using developmental screening tools in their practice (Lipkin et al. 2020).
ASD has a prevalence rate of 1 in 44 children, and prevalence is similar across racial and ethnic groups (Maenner et al. 2021). However, Latinx, individuals with Latin American heritage, children with ASD are more likely to be under-identified (Maenner et al. 2021) or misdiagnosed (Magaña et al. 2013, Christensen et al. 2016) compared with non-Latinx Black and White children. Furthermore, Latinx children receive ASD diagnoses at an even later age than non-Latinx Black and White children (Jo et al. 2015). Without timely and appropriate diagnostic identification, beginning with appropriate screening, Latinx children are at a disadvantage with respect to accessing treatment and services, consequently impacting health equity for this population.
A plurality of factors may contribute to this differential rate of diagnosis, including different symptom presentation patterns (Magaña and Smith 2013) and socio-structural barriers (Bornstein and Cote 2004). Latinx families voice that limited ASD information, stigma, poverty, lack of empowerment to utilize services, dismissal of parental concern by providers, and length of diagnostic process are predominant barriers to seeking ASD-related care (Zuckerman et al. 2014). Families report that these barriers have led to dismissal of concerns, normalization of red flag behaviors, and perpetuation of mistrust in the medical system (Zuckerman et al. 2014).
The literature has traditionally ignored language when explaining factors influencing ASD detection among primarily Spanish-speaking individuals and Latinos, preferring instead to focus on the above cultural factors (Troxel et al. 2018). However, evidence suggests that language plays a central role in health outcomes. For example, a population-based study of Latinx individuals demonstrated those with high levels of acculturation (i.e. effective English communication and endorsing mainstream ideas related to U.S. current events) reported greater ease in accessing care, understanding ASD, and receiving ASD treatment compared to Latinx individuals with low levels of acculturation (Voelkel et al. 2013). The present study aims to address this gap by evaluating the influence of language in the ASD screening process within the context of cultural factors. Therefore, the goal of this review is to strengthen the understanding of how the Spanish language and Spanish culture combined may impact ASD screening with Spanish-speaking families. As screening represents a critical first step in the pathway to early diagnosis and intervention, it is essential to understand the ways in which use of Spanish language interacts with and affects the screening process for both families and providers. The present review provides an evaluation of Spanish language from a sociocultural and relational perspective rather than an examination of linguistics like grammar, or syntax. Specifically, this systematic review aims to synthesize research findings on the influence of Spanish language on the ASD screening process. This review is exploratory in nature; however, the following research questions were considered: 1) How does Spanish language impact the relationship between patients and providers? 2) What are some of the barriers related to screening for ASD in Spanish? 3) What current measures exist for screening for ASD in Spanish, how are they administered, and how is the quality of those screeners? 4) How can we improve ASD screening in the U.S. for Spanish-speaking populations? These questions were addressed by summarizing evaluative studies of Spanish-translated ASD screeners including psychometrics, strengths and weaknesses, and bias risk. Although a major aim of the study includes improving ASD screening services for Spanish-speaking families in the U.S., studies were included from other countries to increase representation and broaden interpretation of current Spanish screeners. This review also addresses the clinical implications related to Spanish language on ASD screening and provides recommendations for use of these screeners in clinical settings. Finally, research on the steps of translating, adapting, and validating pre-existing ASD screeners for use in the heterogeneous Spanish-speaking population both in the U.S. and internationally is discussed.
Method
Search strategy
The search strategy was developed in collaboration with the lead author and a medical research librarian. The search strategy included the following databases: PubMed, Scopus, PsycINFO, and PsycArticles. The final search was completed on February 1st, 2023. The Cochrane Database of Systematic Reviews (Wiley) was explored for existing systematic reviews and protocols. Records were deduplicated using EndNote and then loaded into Covidence for further screening of duplicates. The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (Moher et al. 2009) and was registered before data extraction on the international prospective register of systematic reviews PROSPERO website (registration number CRD42021266041). Detailed search terms are included in the supplementary materials.
Inclusion and exclusion criteria
Inclusion criteria included (1) sample of participants diagnosed with ASD/being evaluated for ASD, (2) Latinx populations that included Spanish-speaking participants, (3) a reference to language included as a research aim or study outcome, and (5) a focus on the screening process or measures for ASD. Conference abstracts, dissertations/theses, and book chapters, were not considered due to them not being peer reviewed in nature. Systematic reviews and meta-analyses were excluded as well; however, these papers served as a tool to find any additional studies for the present review. In addition, papers were excluded if they used non-Spanish-speaking bilingual samples (i.e. German-English bilingual groups, etc.), or if they focused on Spanish cultural themes without discussing Spanish language. Based on the inclusion criteria, some studies were excluded if they focused on an ASD screening tool in Spanish but did not include examination of language in the study or if they instead focused on race, ethnicity, and culture without mention of language as a primary or secondary aim. Additionally, studies examining parent or provider perspectives of a Spanish screening tool were excluded if language was not included as an aspect of the evaluation.
Study selection
Literature search results were downloaded and organized in EndNote and exported to Covidence. The first and second authors each independently screened the titles and abstracts from the initial search results using inclusion criteria. Full-text screening was also conducted independently by the first two authors. Discrepancies were resolved through mediated discussion by the first author and second author.
Risk of bias and quality assessment
The risk of bias was assessed using standardized risk of bias assessment tools for qualitative and case control studies. The Quality Assessment of Diagnostic Accuracy Studies-2 (QUADAS-2; Whiting et al. 2011) was used to evaluate risk of bias and applicability concerns related to patient selection, index tests, reference standard, and flow and timing in cross-sectional studies evaluating ASD screening measures.
Data extraction and synthesis
The third and fourth authors extracted data independently from each eligible study using the Covidence extraction form developed by reviewers before formal data extraction (Appendix A). Discrepancies were resolved through mediated discussion by the first, third, and fourth author. For each article, data were identified for the following variables: screener, reliability and validity data, administration language, translation methodology, sample size, inclusion/exclusion criteria, study location, gender distribution, racial and ethnic distributions, diagnoses, age data, advantages of the screeners, limitations of the screeners, and clinical implications.
Data analysis
Analyses were conducted in three steps. First, interrater reliability was conducted and evaluated during the screening process between the first and second authors. Second, descriptive statistics, such as frequency data and measures of central tendency, were compiled to assess screener psychometrics and other clinically-relevant details. Third, a brief thematic review modeled from Braun and Clarke (2006) characterized the clinical implications of each study into specific themes. Given the brevity of the data included for the thematic analysis, all themes were established via discussion between the first and second author. The first two authors completed the first three steps of the brief thematic review: (1) review the main findings of each included paper a minimum of three times to improve understanding of the data, (2) identify preliminary themes that best characterized the findings, and (3) refined and finalize the themes that best represent the observed clinical implications. The final step was completed by the first author and involved pulling the main findings from each article, identifying specific examples that best represent elements of the themes, interpreting the themes in the results and discussion sections of this paper, and organizing the themes in a table.
All reported results including strengths and limitations are summaries of the information provided by the authors of each cited article. Therefore, when describing these components in the results section, the current authors are providing an overview of the information listed in each article. Elaboration on these summaries is provided in the discussion section of this article in which the authors of the current study provide reflection on the results.
Results
As shown in the PRISMA Flow Chart (Figure 1), the initial search yielded 132 results. Following deduplication, 112 unique articles remained. Study selection via title and abstract screening and full text review yielded 24 articles that met inclusion criteria. Of these 24 studies, only 22 were included in the final analysis based on data availability. Figure 1 details the process of screening records, retrieving reports, and eligibility determination according to PRISMA guidelines. Table 1 summarizes study characteristics for all 22 articles included in this review, described in more detail below. The results section is organized into three parts. First, we describe the characteristics of the reviewed studies. Second, we report on the results of the Spanish-translated screeners. In this section, we discuss psychometrics, strengths and limitations of the screeners, barriers and facilitators to implementation, and clinical implications. Within the strengths and limitations subsection, we further separate each type of screener to clearly highlight specific strengths and weaknesses attributable to the screener. Third, we document the QUADAS-2 bias and quality assessment across the papers.
Figure 1.
PRISMA flow diagram.
From: Page et al. (2021).
Table 1.
Study sample characteristics.
| Study | Sample description | Sample Size (N) | Age Mean(SD) | Gender (% Female) | Race/Ethnicity (%) | Country | Inclusion and Exclusion Criteria |
|---|---|---|---|---|---|---|---|
| Albores-Gallo et al. (2012) | Two groups of Mexican children and their caregivers: 1) typically developing and 2) ASD diagnoses | 456 |
Children: 4.46 years Mothers: 31.79 years Fathers: 35.79 years |
41.9 | Not reported | Mexico |
|
| Atwood et al. (2015) | Peruvian children with documented developmental disabilities and challenging behaviors and their parent/caregiver Diagnoses included: ASD, Down Syndrome, Cerebral Palsy, cognitive deficiencies, and genetic syndromes |
71 dyads |
Children: 41 months Parents: Not reported |
36.6 | Not reported | Peru |
|
| Bölte et al. (2018) | Representatives from 21 European countries involved in COST-ESSEAa | 16 language groupsb | Not reported | Not reported | Not reported | 21 European Countries c |
|
| Canal-Bedia et al. (2011) |
Stage 1: Children aged 18–36 months living in Salamanca and Zamora and high-risk children ages 18–24 Stage 2: Children ages 18–36 months living in Madrid |
Stage 1: 2480 children Stage 2: 2055 children |
Not reported |
Stage 1: 47.5 Stage 2: 46.2 |
Not reported | Spain |
Stage 1:
Stage 2:
|
| Coelho-Medeiros et al. (2019) | Chilean children aged 16–30 months, recruited from the UC Christus Health network | 120 children | 22.47 months | 35.8 | Not reported | Chile |
|
| Cuesta-Gómez et al. (2016) | Toddlers living in Buenos Aires | 420 children | Not reported |
Parents: 77.6 Children: 44.8 |
Not reported | Argentina |
|
| DuBay et al. (2021a) | Spanish-speaking primary caregivers | 25 caregivers |
Parents: 33.2 years Children: 11.8 months |
Parents: 96.0 Children: 44.0 |
Hispanic 100 96.0 born in Latin America 1.0 born in US |
United States |
|
| DuBay et al. (2021b) | Community sample of caregivers who took the M-CHAT-R either in Spanish or in English 3724 records reviewed |
Risk Analyses n = 2591 Missingness Analyses n = 1024 |
Risk Analyses Parents: not reported Children: 21.9 months Missingness Analyses Parents: not reported Children: 22.1 months |
Risk Analyses Parents: not reported Children: 48.75 Missingness Analyses Parents: not reported Children: 49.55 |
74.3 (English-speaking) 25.7 (Spanish-speaking) |
United States |
|
| DuBay et al. (2022) | US-based Latin American Spanish-speaking caregivers of children 8–16 months of age | 380 |
Parents: 31 years Children: 11.3 months |
Parents: 93.6 Children: 48.3 |
Range of countries of origin, including almost all Latin American countries where Spanish is considered an official languaged | United States |
|
| Eugenin et al. (2015) | Caregivers and their toddlers representative of medium-low and low-income residents of a major Chilean city | 200 dyads |
Mother-SJ: 32 years Mother-LP: 27 years Father-SJ: 34 years Father-LP: 29 years Child-SJ: 19.9 months Child-LP: 22.1 months |
Parents: Not reported Children-SJ: 39.8 Children-LP: 47.6 |
Not reported | Chile |
|
| Fombonne et al. (2012) | Children with/without diagnosis of Pervasive Developmental Disorder | 563 children | 8(2.3) years |
Parents: 91.3 Children: 32.9 |
Not reported | Mexico |
|
| Kimple et al. (2014) | Toddlers seeking primary care | Not reportede | Not reported | Not reported | Not reported | United States |
|
| Kuhn et al. (2021) | Low-income, racial/ethnic minority parents and their child who screened positive on the M-CHAT-R/F | 309 parents and children | Child age at screening 21 months Parent age at screening 30 years |
Children: 30.4 Parents: Not reported |
Child race/ethnicity not reported Parents: 55.8 = Black, non-Hispanic 29.2 = Hispanic, any race 8.6 = Other, non-Hispanic 6.3 = White, non-Hispanic |
United States |
|
| Lugo-Marín et al. (2019) | Spanish native adults |
N = 294 46 adults with ASD 41 ASD relatives 17 adults with SSDf 190 non clinical adults |
36.77 years | 51.3 | All participants were born in Spanish territory | Spain |
|
| Magán-Maganto et al. (2020) | Children in Salamanca, Zamora, and Valladolid, Spain presenting for Well Baby Check-ups | 6625 children | (months) 14–22 range: 18.2(.72) 23–36 range: 24.5(1.23) |
14–22 rangeg: 47.31 23–36 range: 48.56 |
Not reported | Spain |
|
| Miller et al. (2011) | Toddlers with a 2006 date of birth, between the ages of 14 and 24 months at the start of the screening period and between 21 and 32 months of age at the end. Diagnoses include: ASD or non-ASD | 796 children | Not reported | Not reported |
hBlack (3.2) Pacific Islander (4) Asian (4.2) Native American (2) White Non-Hispanic (55) Other (0.2) |
United States |
|
| Morales-Hidalgo et al. (2017a) | Spanish sample of children from community and clinical settings between the ages of 4–12 years | 1476 | 7.51 years | 40.17 | Autochthonous (86.32) | Spain |
|
| Reyes et al. (2021) | Mothers of school-aged children (Kindergarten through Grade 12) who spoke either English or Spanish Children were either at high or low risk for internalizing, externalizing, or tic disorders. Diagnoses include: ASD, non-ASD |
199 mothers English: 104 Spanish: 95 |
Spanish Male: 10.6 years Spanish Female: 10.52 years English Male: 10.66 years English Female: 11.04 years |
Spanish: 46.32 English: 43.27 |
Hispanic/Latino (58.3) African American (11.7) White Non-Hispanic (14.6) Mixed (11) Asian American (2) Native American (1.5) Other (.5) |
United States |
|
| Rosenberg et al. (2018) | Children between the ages of 30 and 68 months of age enrolled in the SEEDj Study, recruited via clinical/educational sources due to previous developmental concerns (CE) or birth certificates to represent the general population (BC) Diagnoses included: ASD, DD, no ASD/DD |
2,557 children CE: 1653 BC: 904 |
(months) CE Children: 55.8(7.2) BC Children: 55.6(7.6) |
Parents: 99 Children: 33.9 |
Maternal Race: Black (17.7) White (71.2) Other (1.2) Maternal Ethnicity: Hispanic (11.5) Non-Hispanic (88.5) |
United States |
|
| Scarpa et al. (2013) | Toddlers in Southwest Virginia presenting for well-child visits | 447 toddlers | Not reported |
Parents: 86.4 Children: 45.2 |
Hispanic (27.1) Black (25.3) White (25.1) Mixed (8.9) Asian (1.8) Native American (0.7) Not reported (11.2) |
United States |
|
| Windham et al. (2014) | Primarily low-income Latinx families covered by government-funded insurance | 1760 families | Parents not reported | Parent gender not reported Children: 50.1 |
Not reported | United States |
|
| Zuckerman et al. (2013) | Primary Care Pediatricians (PCPs) | 267 PCPs | Not reported | Not reported | Not reported | United States |
|
COST-ESSEA: European Cooperation in Science and Technology; (www.cost.eu) action ‘Enhancing the Scientific Study of Early Autism’ (ESSEA; for details see www.cost-essea.com) participated. COST-ESSEA is a network of over 60 scientists from 23 European countries, including three LAMI countries (Romania, FYR Macedonia, and Turkey), aiming to improve function in early autism research.
These 16 language/cultural groups in practice typically use the same versions of adapted diagnostic tools: Austria/Germany/Switzerland (German), Belgium/The Netherlands (Dutch), Czech Republic, Finland, France (including information on French-Canadian adaptations of tools), Hungary, Iceland, Italy, Israel, Macedonia, Poland, Portugal (including information on Brazilian adaptations of tools), Spain, Sweden/Norway (Scandinavia), Romania, and UK/Ireland (English; even US versions of instruments included here).
21 European Countries.
Countries of origin include: Mexico (N = 80), United States (N = 64), El Salvador (N = 48), Honduras (N = 33), Guatemala (N = 28), Nicaragua (N = 4), Costa Rica (N = 2), Panama (N = 1), Puerto Rico (N = 20), Cuba (N = 13), Dominican Republic (N = 8), Colombia (N = 28), Venezuela (N = 11), Peru (N = 10), Bolivia (N = 8), Chile (N = 3), Argentina (N = 1), Ecuador (N = 1), and Paraguay (N = 1).
only analyzed screener results from medical record, 338 questionnaires from pre-transition and 251 from post transition to WHS (589).
Schizophrenia spectrum disorders.
these values are (n) and not (%).
only reported for 524 of the 796 children screened.
PLAY-MH: Project to Learn About Youth-Mental Health, a multi-site (Colorado, Florida, Ohio, South Carolina) study aiming to estimate the prevalence, treated prevalence, and co-occurrence of internalizing, externalizing, and tic disorders in school-aged youth (ages 5 to 18).
SEED: Study to Explore Early Development – Phase I, a multi-site (California, Colorado, Georgia, Maryland, North Carolina, Pennsylvania), case-control study exploring phenotypes and determinants of ASD.
Characteristics of reviewed studies
Of the 22 included studies, 11 were conducted in the United States (DuBay et al. 2021a, DuBay et al. 2021b, DuBay et al. 2022, Kimple et al. 2014, Kuhn et al. 2021, Miller et al. 2011, Reyes et al. 2021, Rosenberg et al. 2018, Scarpa et al. 2013, Windham et al. 2014, Zuckerman et al. 2013), and the other 11 were conducted in Latin American (Albores-Gallo et al. 2012, Atwood et al. 2015, Coelho-Medeiros et al. 2019, Cuesta-Gómez et al. 2016, Eugenin et al. 2015, Fombonne et al. 2012, Lugo-Marín et al. 2019, Morales-Hidalgo et al. 2017a) or European countries (Bölte et al. 2018, Canal-Bedia et al. 2011, Magán-Maganto et al. 2020). In total, six countries were represented across all included papers.
A total of 7 studies involved parents and their children (Albores-Gallo et al. 2012, Atwood et al. 2015, Eugenin et al. 2015, Kuhn et al. 2021, Reyes et al. 2021, Rosenberg et al. 2018, Windham et al. 2014). The remainder of the studies (n = 15) involved either only parents (n = 4), only children (n = 8), or only non-parent adults (n = 3; e.g. primary care pediatricians) and reported the demographics for each group, respectively. Of the 22 included studies, only 14 studies included participant data related to age (Albores-Gallo et al. 2012, Atwood et al. 2015, Coelho-Medeiros et al. 2019, DuBay et al. 2021a, DuBay et al. 2021b, DuBay et al. 2022, Eugenin et al. 2015, Fombonne et al. 2012, Kuhn et al. 2021, Lugo-Marín et al. 2019, Magán-Maganto et al. 2020, Morales-Hidalgo et al. 2017b, Reyes et al. 2021, Rosenberg et al. 2018). Of the studies that included age data, the reported age range for children was 11.3 months to 18 years), while the reported age range for adults was 26 years to 37 years. Specific details on participant racial and ethnicity data were frequently omitted; however, race and ethnicity was often broadly discussed when describing the study setting to suggest the majority of samples were Spanish-speaking and from Latin American countries of origin. Only eight studies provided specific breakdowns of race and ethnicity (DuBay et al. 2021a, DuBay et al. 2021b, Kuhn et al. 2021, Lugo-Marín et al. 2019, Miller et al. 2011, Morales-Hidalgo et al. 2017a, Reyes et al. 2021, Rosenberg et al. 2018). When gender was reported, most studies reported relatively even distributions (50% females and 50% males). Yet, four studies did not provide any gender details (Bölte et al. 2018, Kimple et al. 2014, Miller et al. 2011, Zuckerman et al. 2013).
A total of 14 studies did not identify diagnoses present before or after screening (Bölte et al. 2018, Canal-Bedia et al. 2011, Cuesta-Gómez et al. 2016, Dubay et al. 2021a, DuBay et al. 2021b, DuBay et al. 2022, Eugenin et al. 2015, Kimple et al. 2014, Magán-Maganto et al. 2020, Morales-Hidalgo et al. 2017a, Reyes et al. 2021, Scarpa et al. 2013, Windham et al. 2014, Zuckerman et al. 2013), and three studies did not clearly identify inclusion and exclusion criteria (Dubay et al. 2021a, Eugenin et al. 2015, Morales-Hidalgo et al. 2017a). Two studies did not explicitly evaluate a Spanish-translated screener, but rather analyzed the potential impact of demographic factors, including Spanish maternal language and appropriate application of interpreters, on screening results (Kuhn et al. 2021, Rosenberg et al. 2018).
Spanish-translated screener results
The Modified Checklist for Autism in Toddlers (M-CHAT) was the most frequently studied screener (n = 14; Albores-Gallo et al. 2012, Bölte et al. 2018, Canal-Bedia et al. 2011, Coelho-Medeiros et al. 2019, Cuesta-Gómez et al. 2016, Dubay et al. 2021b, Eugenin et al. 2015, Kimple et al. 2014, Kuhn et al. 2021, Magán-Maganto et al. 2020, Miller et al. 2011, Scarpa et al. 2013, Windham et al. 2014, Zuckerman et al. 2013), followed by the Ages and Stages Questionnaire (ASQ; n = 2; Windham et al. 2014, Zuckerman et al. 2013), First Year Inventory version 3.1 (FYIv.3.1; n = 2; DuBay et al. 2021a, DuBay et al. 2022), and the Social Communication Questionnaire (SCQ; n = 2; Reyes et al. 2021, Rosenberg et al. 2018).
Translation procedures differed across studies, with some studies utilizing native Spanish-speakers or fluent Spanish-speakers for translation or administration (n = 8; Atwood et al. 2015, DuBay et al. 2021a, DuBay et al. 2021b, Eugenin et al. 2015, Fombonne et al. 2012, Lugo-Marín et al. 2019, Morales-Hidalgo et al. 2017b, Windham et al. 2014) and others hiring formal interpreters or translators (n = 9; Canal-Bedia et al. 2011, Coelho-Medeiros et al. 2019, Cuesta-Gómez et al. 2016, DuBay et al. 2022, Eugenin et al. 2015, Kuhn et al. 2021, Magán-Maganto et al. 2020, Scarpa et al. 2013, Windham et al. 2014). Many studies applied or evaluated the forward-back translation process (n = 7; Canal-Bedia et al. 2011, Cuesta-Gómez et al. 2016, DuBay et al. 2021a, DuBay et al. 2021b, Fombonne et al. 2012, Magán-Maganto et al. 2020, Morales-Hidalgo et al. 2017b), some used an informal translation approach (n = 2; Albores-Gallo et al. 2012, Atwood et al. 2015), and one applied a translation with cultural adaptation (TCA) approach (Lugo-Marín et al. 2019). Additionally, many studies also used a cognitive interview or pilot interview stage in the translation process to help further clarify any confusion and interpretation challenges among caregivers (n = 7; Canal-Bedia et al. 2011, Cuesta-Gómez et al. 2016, DuBay et al. 2021a, DuBay et al. 2021b, DuBay et al. 2022, Eugenin et al. 2015, Magán-Maganto et al. 2020). Moreover, three studies did not describe a translation process (Bölte et al. 2018, Miller et al. 2011, Zuckerman et al. 2013) and five studies used already translated versions of screeners and did not provide explicit details on the original translation procedure (Kimple et al. 2014, Kuhn et al. 2021, Scarpa et al. 2013, Windham et al. 2014).
Of the 22 included studies, seven screeners were administered in written format (Albores-Gallo et al. 2012, Coelho-Medeiros et al. 2019, Fombonne et al. 2012, Kimple et al. 2014, Miller et al. 2011, Scarpa et al. 2013, Zuckerman et al. 2013), six were administered in oral format (Atwood et al. 2015, Canal-Bedia et al. 2011, Cuesta-Gómez et al. 2016, DuBay et al. 2021a, Reyes et al. 2021, Rosenberg et al. 2018), and 12 included a combination of written and oral administration (Albores-Gallo et al. 2012, Bölte et al. 2018, Canal-Bedia et al. 2011, Cuesta-Gómez et al. 2016, DuBay et al. 2021b, Eugenin et al. 2015, Kuhn et al. 2021, Lugo-Marín et al. 2019, Magán-Maganto et al. 2020, Miller et al. 2011, Morales-Hidalgo et al. 2017b, Windham et al. 2014). In summary, a variety of translation approaches and administration approaches were applied across the included studies.
Psychometric properties
Not all studies included reliability or validity statistics, and it was unclear in some studies whether a comparison screener was used to validate Spanish screeners. Cronbach’s alpha statistics were provided for 10 studies (Atwood et al. 2015, Coelho-Medeiros et al. 2019, Cuesta-Gómez et al. 2016, Fombonne et al. 2012, Lugo-Marín et al. 2019, Magán-Maganto et al. 2020, Morales-Hidalgo et al. 2017b, Reyes et al. 2021, Rosenberg et al. 2018, Scarpa et al. 2013). Factors related to education and income levels appeared to impact Cronbach’s alpha for Scarpa et al. (2013), such that Cronbach’s alpha was lower in the lower income sample. Further, Rosenberg et al. (2018) found that Cronbach’s alpha was lower among a sample recruited from the general population compared to a sample recruited from sources with previous developmental concerns. Additionally, test-retest statistics were obtained for three studies (Canal-Bedia et al. 2011, Lugo-Marín et al. 2019, Windham et al. 2014) and internal reliability or consistency was assessed for four studies (Albores-Gallo et al. 2012, Fombonne et al. 2012, Morales-Hidalgo et al. 2017a, Coelho-Medeiros et al. 2019).
Many studies used a range of validity statistics: concurrent (Coelho-Medeiros et al. 2019), discriminant (Albores-Gallo et al. 2012, Coelho-Medeiros et al. 2019, Fombonne et al. 2012), convergent (Albores-Gallo et al. 2012, Lugo-Marín et al. 2019, Morales-Hidalgo et al. 2017b), criterion (Albores-Gallo et al. 2012), and construct validity (Albores-Gallo et al. 2012). Additionally, sensitivity and specificity data were reported for seven studies (Canal-Bedia et al. 2011, Coelho-Medeiros et al. 2019, Lugo-Marín et al. 2019, Magán-Maganto et al. 2020, Morales-Hidalgo et al. 2017b, Rosenberg et al. 2018). Each study incorporated these statistics into their findings slightly differently. For example, Albores-Gallo et al. (2012) evaluated convergent validity with Spearman correlations, assessed discriminant validity with t-tests and chi-square analyses, and established criterion validity with kappa coefficients. Their findings indicated that the Mexican-M-CHAT showed strong discriminant validity between typically developing and autism populations and moderate internal consistency and convergent validity with the CBCL and ADI-R. Further, criterion validity for the Mexican-M-CHAT demonstrated a higher concordance with the nonverbal dimension on the ADI-R.
Some studies did not report on reliability and validity but instead reported on false positives, completion rates, missingness, and measurement variance (DuBay et al. 2021b, DuBay et al. 2022). Studies that reported on false positives, completion rates, and missingness often demonstrated significant differences in positive screenings between English-speaking and Spanish-speaking samples (DuBay et al. 2021b) as well as differences in translation approaches (DuBay et al. 2022). Measurement and item-specific variance findings also provided details on specific items that may be more or less challenging for Spanish-speaking families to comprehend (DuBay et al. 2021b, DuBay et al. 2022). Together, these psychometric statistics enhance the need to adequately translate and culturally adapt ASD screeners for Spanish-speaking families. See Table 2 for a more detailed breakdown of the psychometric properties for the relevant studies.
Table 2.
Measure/screener characteristics.
| Study | Study Design | Name of Screener | Translation Process | Psychometric Statistics | Risk of Bias/QUADAS-2 |
|---|---|---|---|---|---|
| Albores-Gallo et al. (2012) | Case control | Mexican Modified Checklist for Autism in Toddlers (MM-CHAT)a |
|
|
|
| Atwood et al. (2015) | Cross sectional study | Communication Complexity Scale (CCS) |
|
|
|
| Bölte et al. (2018) | Cross sectional study | CBCL, Q-CHAT/M-CHAT, SCQ, CDI, SRSc |
|
Not reported | No Risk of Bias analysis |
| Canal-Bedia et al. (2011) | Cross sectional study | Modified Checklist for Autism in Toddlers (M-CHAT) |
|
|
|
| Coelho-Medeiros et al. (2019) | Case control study | Modified Checklist for Autism in Toddlers – Revised (M-CHAT-R) Chilean Version; Modified Checklist for Autism in Toddlers – Revised with Follow-up (M-CHAT-R/F) Chilean Versiond | Phase 1 of this study:e
|
|
|
| Cuesta-Gómez et al. (2016) | Cross sectional study | M-CHAT |
|
|
|
| DuBay et al. (2021a) | Qualitative research | First year inventory (FYI) 3.1 (FYv.3.1) |
|
Not reported |
|
| Dubay et al. (2021b) | Retrospective Medical Chart Review | M-CHAT-R Spanish-Western Hemisphere Version (SWH) | Translated specifically for Latin American Spanish-speaking populations
Translators recruited to represent multiple Spanish dialects |
No reliability or validity statistics reported Risk-Score Analyses
Missingness Analyses
|
|
| Dubay et al. (2022) | Mixed Methods | FYIv3.1e | Forward-Back
Translation with Cultural Adaptation Developed using multiple translators from a range of backgrounds
Cognitive Interviews
|
Completion Rates Those who responded to the TCA version were more likely to discontinue the survey prior to completion. Missingness Not significant different between the groups Variability More evenly distributed selection of response among the TCA group Measurement Invariance Non-invariance was identified at the first level of invariance testing suggesting that the item factor loadings were not equivalent between the two groups No reliability or validity statistics reported |
|
| Eugenin et al. (2015) | Quantitative and cross sectional study |
M-CHAT |
|
Not reported |
|
| Fombonne et al. (2012) | Case control study |
Social Responsiveness Scale (SRS) |
|
|
|
| Kimple et al. (2014) | Cross sectional study | M-CHAT |
|
Not reported |
|
| Kuhn et al. (2021) | Randomized Control Trial | M-CHAT-R/F |
|
Not reported | No Risk of Bias analysis |
| Lugo-Marín et al. (2019) | Case control study | Spanish Autism-Spectrum Quotient (AQ-Short)f |
|
|
|
| Magán-Maganto et al. (2020) | Cross sectional study | M-CHAT-R/F (revised/follow-up) |
|
|
|
| Miller et al. (2011) | Cross sectional study | M-CHAT and the Infant Toddler Checklist (ITC) |
|
Not reported |
|
| Morales-Hidalgo et al. (2017b) | Cross sectional study | Spanish version of the Childhood Autism Spectrum Test (CAST)g; Full version = all items; Reduced version = 3 developmental items removedg |
|
Full CAST
Reduced CAST
Convergent validity was high between the full and reduced versions and the ADI-R, ADOS-2, and CBCL scales. |
|
| Reyes et al. (2021) | Cross sectional study | Social Communication Questionnaire (SCQ) |
|
|
|
| Rosenberg et al. (2018) | Case control study | SCQ |
|
|
|
| Scarpa et al. (2013) | Cross sectional study | M-CHAT |
|
Reliability by education groups:
|
|
| Windham et al. (2014) | Cross sectional study | M-CHAT; ASQ |
|
Rescreened children:
Re-screening children who initially passed both screeners:
|
|
| Zuckerman et al. (2013) | Observational, cross-sectional study | ASQ, PEDS, Denver, CDI, MCHAT, ASSQ, SCQj |
|
Not reported |
|
Other measures evaluated in this study include: The Autism Diagnostic Interview-Revised (ADI-R) and the Child Behavior Checklist (CBCL).
The original paper evaluating the screener obtains reliability and validity statistics (Brady et al. 2012).
Q-CHAT: Quantitative Checklist for Autism in Toddlers. Other measures evaluated in this study include: ADOS, ADI-R, CBCL, Social Communication Questionnaire (SCQ), Children’s Depression Inventory (CDI), Development and Well-Being Assessment (DAWBA), Vineland Adaptive Behaviour Scales (VABS), Infant Behavior Questionnaire-Revised (IBQ-R), Early Childhood Behavior Questionnaire-Revised (ECBQ-R), Social Responsiveness Scale (SRS), Infant Toddler Sensory Profile (ITSP), Repetitive Behavior Scale-Revised (RBS-R), Mullen Scales of Early Learning (MSEL).
Other measures evaluated in this study include: Autism Diagnostic Observation Schedule (ADOS-2).
Phase 1 of this study includes details on the translation process for this screener. Refer to those papers for additional details (Coelho-Medeiros et al. 2019, Robins et al. 2017).
Refer to Dubay et al. (2021a) for a detailed description of the translation process.
Other measures include a WISC-IV, ADI-R, CBCL, ADOS-2.
Families for whom Spanish was the primary language only comprised of 3.8% of the total sample. Further, only the California and Colorado sites were able to recruit families who primarily spoke Spanish. Therefore, the authors do not describe how the materials given to these 3.8% of participants were translated.
The majority of SCQ’s given in this sample were in English (<4% were given in Spanish). These are not sensitivity/specificity metrics for the Spanish-translated SCQ.
ASQ, Parents’ Evaluation of Developmental Status (PEDS), Denver Developmental Screening Test Autism Spectrum Screening Questionnaire (ASSQ).
Strengths and limitations
Among studies evaluating Spanish-translated screeners (n = 16; Albores-Gallo et al. 2012, Atwood et al. 2015, Canal-Bedia et al. 2011, Cuesta-Gómez et al. 2016, Coelho-Medeiros et al. 2019, DuBay et al. 2021a, DuBay et al. 2021b, DuBay et al. 2022, Fombonne et al. 2012, Kimple et al. 2014, Kuhn et al. 2021, Lugo-Marín et al. 2019, Magán-Maganto et al. 2020, Morales-Hidalgo et al. 2017b, Reyes et al. 2021, Scarpa et al. 2013), strengths and limitations were characterized for the following screeners: Spanish version of the Childhood Autism Spectrum Test (CAST), Communication Complexity Scale (CCS), First Year Inventory (FYI) 3.1, M-CHAT (Spain Spanish Version [SS], Western Hemisphere Spanish Version [WH], Argentinian Version, Mexican Version), M-CHAT-Revised (M-CHAT-R) or M-CHAT-R with Follow-Up [M-CHAT-R/F]), Social Responsiveness Scale (SRS), and Social Communication Questionnaire (SCQ). See Table 3 for a more detailed analysis of each study’s main findings categorized by theme.
Table 3.
Main findings, clinical implications, and themes addressed by included studies.
| Study | Main findings | Themes |
|---|---|---|
| Albores-Gallo et al. (2012) |
|
Screener evaluation Cultural awareness Translation barriers |
| Atwood et al. (2015) |
|
Intervention Screener evaluation |
| Bölte et al. (2018) |
|
Knowledge/awareness Barriers to care Screener evaluation Translation barriers Cultural awareness |
| Canal-Bedia et al. (2011) |
|
Screener evaluation Intervention |
| Coelho-Medeiros et al. (2019) |
|
Screener evaluation Intervention Knowledge/awareness |
| Cuesta-Gómez et al. (2016) |
|
Screener evaluation Intervention Knowledge/awareness Translation barriers Cultural awareness |
| DuBay et al. (2021a) |
|
Screener evaluation Translation barriers Intervention |
| DuBay et al. (2021b) |
|
Screener evaluation Translation barriers Cultural awareness |
| DuBay et al. (2022) |
|
Screener evaluation Translation barriers Cultural awareness |
| Eugenin et al. (2015) |
|
Screener evaluation Barriers to care Knowledge/awareness Translation barriers Cultural awareness Intervention |
| Fombonne et al. (2012) |
|
Screener evaluation Intervention Barriers to care |
| Kimple et al. (2014) |
|
Screener evaluation Translation barriers Cultural awareness |
| Kuhn et al. (2021) |
|
Translation barriers Cultural awareness Barriers to care |
| Lugo-Marín et al. (2019) |
|
Screener evaluation Cultural awareness |
| Magán-Maganto et al. (2020) |
|
Screener evaluation Intervention Knowledge/awareness |
| Miller et al. (2011) |
|
Intervention Knowledge/awareness Cultural awareness Barriers to care |
| Morales-Hidalgo et al. (2017a) |
|
Screener evaluation Cultural awareness |
| Reyes et al. (2021) |
|
Screener evaluation Translation barriers |
| Rosenberg et al. (2018) |
|
Cultural awareness Knowledge/awareness |
| Scarpa et al. (2013) |
|
Screener evaluation Translation barriers Cultural awareness Intervention |
| Windham et al. (2014) |
|
Intervention Cultural awareness |
| Zuckerman et al. (2013) |
|
Barriers to care Translation barriers Cultural awareness Intervention |
Spanish version of the Childhood Autism Spectrum test (CAST)
The CAST demonstrated to be a reliable and valid test for ASD screening in Spanish school-aged children. In particular, the screener showed high values of sensitivity and specificity that align closely with previous research (Scott et al. 2002). Notably, both a full and reduced version of the CAST was evaluated by Morales-Hidalgo et al. (2017b). The authors report that the reduced version possesses many strengths, including better psychometric properties and higher correlations with the ADI-R, ADOS-2 and CBCL specific scales. All limitations of this screener pertain to the full version, which identified a few items that showed low discriminative poor between children with ASD and without ASD. Similarly, the general development questions included in the screener are considered a limitation due to evidence demonstrating that these items did not enhance comprehension or improve the screener’s psychometric properties. Therefore, the authors recommend the reduced version as a solution to the limitations evident in the full version. Ultimately, findings support application of the adapted full Spanish version and the reduced version of the CAST for screening for milder or subtler manifestations of ASD in a Spanish population.
Communication Complexity Scale (CCS)
Strong, positive correlations with the Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist (CSBS-ITC) and limited reliance on parent report were considered strengths of the Spanish-translated CCS (Atwood et al. 2015). Some limitations include that item comprehension appeared to depend on the syntax or pronunciation used by the administrator, and that translation may reflect cultural/linguistic differences across cities and regions rather than generalize to Peru (the origin country). Further, the validation sample was not balanced between gender, and the measure has only been validated in Peruvian children, thereby limiting generalizability. Overall, findings support the CCS as a valid screening measure of communication behaviors among native Spanish-speaking children in Peru.
First years Inventory (FYI) v. 3.1
A few studies evaluated the FYI v. 3.1. Across all studies, the Spanish-translated FYI’s strengths included a rigorous translation and cultural adaptation process. Limitations for one study included a lack of representation for some Latin American Spanish dialects or cultures among both translators and participants as well as a disparity in administration of the screener, such that it was delivered as an interview rather than independent parent-report (DuBay et al. 2021a). Alternatively, in a follow-up paper (DuBay et al. 2022), representation was achieved across a wide range of countries of origin despite the study taking place in the United States. Further, DuBay et al. (2022) successfully garnered strengths and limitations reported by caregivers completing the surveys and discerned important nuances in item recognition, length of item descriptions, and language preferences (e.g. ‘hijo/hija’ instead of ‘hijo’ only to represent a child). The translated measure is praised for its rigorous translation and adaptation approach, and although not a limitation of the screener, it is acknowledged that this level of rigor is challenging, time consuming, and resource intensive to develop. These barriers increase risk of error, which could unintentionally impact the reliability of the screeners.
Modified Checklist for Autism in Toddlers (M-CHAT)
Many studies included the M-CHAT. We first discuss the studies that examined its dialectic variations, then we separately review the study that evaluated the Argentinian M-CHAT as unique strengths and limitations emerged from that research, and finally we discuss a revised version of the M-CHAT.
When considering strengths and limitations of the M-CHAT, it is necessary to review and compare the studies that examined its dialectic variations. Five studies (Albores-Gallo et al. 2012, Canal-Bedia et al. 2011, Eugenin et al. 2015, Kimple et al. 2014, Magán-Maganto et al. 2020) evaluated the M-CHAT in this manner. The following strengths were described: high values of sensitivity and specificity that were similar to the original M-CHAT (Coelho-Medeiros et al. 2019, Magán-Maganto et al. 2020), flexibility with phone-administration that may increase access to screening (Canal-Bedia et al. 2011), minimal evidence of differences between the M-CHAT SS and the M-CHAT WH when used with Mexican/Central American caregivers in the United States (Kimple et al. 2014), simplicity and ease of answering across SES levels (Magán-Maganto et al. 2020), incorporation of implicit references to developmental milestones for teaching purposes (Eugenin et al. 2015), and inclusion of questions that resemble and require reflection of daily activities familiar to Spanish-speaking parents (Eugenin et al. 2015). Limitations included difficulties comprehending questions (Albores-Gallo et al. 2012, Eugenin et al. 2015) – especially regarding repetitive or unusual behaviors (Eugenin et al. 2015), increased time and financial resources for follow-up (Canal-Bedia et al. 2011, Magán-Maganto et al. 2020), lower positive predictive value than the original M-CHAT (Canal-Bedia et al. 2011), potential barriers to in-person screening (Canal-Bedia et al. 2011), and difficulty with blinding and preventing caregiver bias when evaluating the efficacy of the screeners (Coelho-Medeiros et al. 2019).
Second, the study reporting on the development of the Argentinian M-CHAT identified the following strengths: robust translation and methodology to support content, semantic, and technical equivalence, high test-retest reliability and item-response agreement when comparing mothers and fathers, efficiency as a screening tool for pediatricians, and inclusive, elementary-level reading for parents with lower literacy (Cuesta-Gómez et al. 2016). These strengths emphasize the utility of this translated screener when considering its ease of use for providers and reporters, and its similarities to the original screener. However, this study was conducted in Buenos Aires, which may limit generalizability to a specific subset of the Argentinian population. An additional limitation includes that a pediatrician must discern the screener’s administration method based on the parent’s literacy level (i.e. self-administered or administered with assistance). Further, the locational specificity of the screener comes at the cost of reduced clarity and relatability for users not originally from or currently living in Argentina. These factors limit widespread utility given the practical challenges and more limited scope of the translation.
Last, the M-CHAT-R and M-CHAT-R/F are revised and updated Spanish versions of the previous M-CHAT (Coelho-Medeiros et al. 2019, DuBay et al. 2021b, Magán-Maganto et al. 2020). Various versions of the M-CHAT-R and M-CHAT-R/F exist with multiple different Spanish translations. Strengths of the M-CHAT-R/F included accurate detection of ASD, reduction of follow up appointments, and adequate sensitivity and specificity scores. Limitations highlight that psychometric properties may be especially dependent on the age of the child and their education level. More specifically, more accurate results were noted for younger children and for parents with higher education levels. These limitations are important when considering AAP recommends formal ASD screening at ages 18 and 24 months (Hyman et al. 2020). Additionally, internal consistency may be on the lower end of acceptability. Further, concerns remain regarding how the translated versions compare to the English versions: DuBay et al. (2021b) demonstrated that the M-CHAT-R Spanish Western Hemisphere translation does not perform the same way as the original English M-CHAT-R and instead is more sensitive to the ASD diagnosis and positive screening of ASD symptoms in Spanish-speaking populations in the United States.
Social Responsiveness Scale (SRS). The Spanish-translated SRS demonstrated strengths in both its teacher and parent forms (Fombonne et al. 2012). For both forms, excellent discriminant validity was documented when discerning children diagnosed with Pervasive Developmental Disorder (PDD) from typically developing children that did not receive a PDD or ASD-related diagnosis. This is a key finding for increased detectability of Spanish-speaking children showing signs of ASD, which can reduce diagnostic gaps and improve access to early intervention. Interrater reliability statistics were also strong, evidenced by the moderately high correlations observed between parent and teacher ratings. Noted limitations include lengthy administration time, limited age range for validation (ages 4–13), lack of data determining concurrent validity with other screening measures, and lack of discriminant validity data differentiating ASD from other clinical presentations among Spanish-speaking populations. These limitations indicate that use of this screener may impede early identification of ASD (i.e. before age 4) among Spanish-speaking children. Additionally, the Spanish-translated SRS was studied in 2012 before the changes for an autism diagnosis were released in the DSM. Therefore, the Spanish SRS may be suited as a general screener for potential autism-specific behaviors until restudied utilizing the current DSM-5 criteria.
Social Communication Questionnaire (SCQ). Strengths of the Spanish-translated SCQ include its ease and low cost of implementation, as well as its ability for use across a wide age range. This may be especially relevant when screening for ASD symptoms among school-aged children who may have immigrated to the United States past the age when developmental surveillance measures intended for younger children may have flagged them. A limitation of this measure is its lack of comparison norms for Spanish-speaking populations. Reyes et al. (2021) noted other limitations of the Spanish-translated SCQ when used in a nonclinical sample. Translated items may not reflect the intended meaning of the original measure, resulting in the potential misinterpretation of items reduced reliability and validity. Moreover, SCQ results may reflect co-occurring behavior and emotional problems masked as ASD symptoms rather than ASD symptoms themselves, further reducing its potential validity.
Barriers and facilitators to implementation and interpretation
Additional studies focused on assessing successes and barriers to implementation of screeners (n = 6; Bölte et al. 2018, Kimple et al. 2014, Reyes et al. 2021, Scarpa et al. 2013, Windham et al. 2014, Zuckerman et al. 2013). The findings from these studies highlight important differences in screener performance between low- and higher-income or low- and high-education Spanish-speaking families (Bölte et al. 2018, Reyes et al. 2021, Scarpa et al. 2013, Windham et al. 2014, Zuckerman et al. 2013). Screeners were less effective when presented to Spanish-speaking families with lower income levels and lower education histories. Reyes et al. (2021) found that Spanish-speaking mothers with less education attainment reported more ASD symptoms compared to Spanish-speaking mothers with more education attainment. Additionally, income level affects screener accessibility (Bölte et al. 2018, Windham et al. 2014, Zuckerman et al. 2013). For example, middle-income European countries are at the highest disadvantage for availability of translated measures compared to high- or low-income European countries (Bölte et al. 2018). Further, Spanish-speaking families in low-income communities are underserviced due to the high costs of translated screening tools in predominantly English-speaking communities or countries like the U.S. (Zuckerman et al. 2013).
When examining differences in education level, Spanish-speaking respondents with fewer years of completed education reported more ASD symptoms among their children compared to Spanish-speaking respondents with higher educational attainment, despite there being no differences in overall symptom reporting between English- and Spanish-speaking respondents (Reyes et al. 2021). Additionally, respondents with lower education attainment demonstrated more difficulty with screeners due to literacy and comprehension challenges (Scarpa et al. 2013). Further, slight differences were noted between Spanish-translated screeners of different Latinx dialects (Kimple et al. 2014), demonstrating the heterogeneity of Latinx culture and Spanish language and the complexity of translated screening tools. In particular, Kimple et al. (2014) measured response differences when comparing the M-CHAT SS and M-CHAT WH, which indicated distinctions in cultural interpretation rather than translation differences among the Spanish-speaking population. Although there were limited differences in abnormal screening rates for the M-CHAT SS and M-CHAT WH, both measures produced higher abnormal screening rates for Spanish-speakers compared to English-speakers using the original M-CHAT. This finding further highlights the importance of proper Spanish translation and interpretation in ASD screening. See Table 3 for a more detailed breakdown of each included study’s main findings.
Clinical implication themes
All studies offered clinical implications relevant to the study question. In this section, the current authors summarize the clinical implications provided by the authors of the cited articles. In order to provide broader conceptualizations of the implications of utilizing Spanish screeners for ASD, the authors of the current study read and grouped implications listed in each article into themes using a brief thematic analysis protocol (Braun and Clarke 2006): barriers to care (n = 6), cultural awareness (n = 15), translation barriers (n = 12), intervention (n = 12), knowledge/awareness (n = 7), and screener evaluation (n = 16). Regarding barriers to care, authors discussed issues related to limited access to primary or specialty care providers for Spanish-speaking individuals, especially families from low-to-middle income countries or rural communities (Bölte et al. 2018, Scarpa et al. 2013, Zuckerman et al. 2013). Additional barriers to care included price and opportunity cost related to time for follow-up visits and interviews for some screeners (Eugenin et al. 2015, Fombonne et al. 2012, Miller et al. 2011), and availability of post-screening services for Spanish-speaking families (Eugenin et al. 2015, Zuckerman et al. 2013).
Themes of cultural awareness and translation barriers centered around challenges associated with comprehending differences between cultural groups within the Latinx community (Albores-Gallo et al. 2012, Cuesta-Gómez et al. 2016, Eugenin et al. 2015, Reyes et al. 2021, Scarpa et al. 2013, Zuckerman et al. 2013). For example, generalizability concerns were noted for the Argentinian M-CHAT, as non-Argentinian mothers might need assistance understanding certain items (Cuesta-Gómez et al. 2016). Additionally, for the Mexican M-CHAT, it was noted that the translation process involved making small cultural adjustments to the screener, such as describing the ‘peek-a-boo’ game, since Mexican mothers do not know the explicit name for it. Further, issues with patient/provider interactions, such as miscommunication between patients and providers due to language barriers, highlighted the importance of multicultural training and teaching for providers working with Spanish-speaking populations (Zuckerman et al. 2013). The intervention theme consisted of recommendations for screener implementation outside of the U.S. (Atwood et al. 2015), screener integration into primary care clinics (Miller et al. 2011, Zuckerman et al. 2013), and adaptation of validated screeners for appropriate age and cultural groups (DuBay et al. 2021a, Scarpa et al. 2013, Windham et al. 2014). The importance of incorporating Latinx families in the screening and diagnostic process was also considered (Eugenin et al. 2015).
Within the knowledge/awareness theme, a general lack of ASD knowledge and awareness was noted in Spanish-speaking or Latinx populations, thus emphasizing the importance of developing these screeners as tools for improved parental education and awareness for early detection. Last, the screener evaluation theme captured interpretations of the screener included in the study (e.g. Kimple et al. 2014) and suggestions for future more rigorous evaluation of future screeners (e.g. Scarpa et al. 2013). See Table 3 for a more detailed breakdown of each study’s main findings categorized by theme.
QUADAS-2 bias and quality assessment
Mixed results emerged regarding risk of bias and quality assessment. Most studies included were cross sectional study designs (n = 12; Atwood et al. 2015, Bölte et al. 2018, Canal-Bedia et al. 2011, Cuesta-Gómez et al. 2016, Fombonne et al. 2012, Kimple et al. 2014, Magán-Maganto et al. 2020, Miller et al. 2011, Morales-Hidalgo et al. 2017a, Reyes et al. 2021, Scarpa et al. 2013, Windham et al. 2014, Zuckerman et al. 2013), some were case control designs (n = 5; Albores-Gallo et al. 2012, Coelho-Medeiros et al. 2019, Fombonne et al. 2012, Lugo-Marín et al. 2019, Rosenberg et al. 2018), one was a qualitative design (DuBay et al. 2021b), and one was a mixed methodology design (DuBay et al. 2022). Risk of bias was considered relatively low, but a few studies had higher risk of bias due to lack of clarity regarding selection bias, detection bias, and reporting bias (Table 2). No study was excluded or considered high risk due to the risk of bias analysis. An adapted version of the QUADAS-2 evaluated bias risk for the 16 screener evaluation studies (Albores-Gallo et al. 2012, Atwood et al. 2015, Canal-Bedia et al. 2011, Cuesta-Gómez et al. 2016, Coelho-Medeiros et al. 2019, DuBay et al. 2021a, DuBay et al. 2021b, DuBay et al. 2022, Fombonne et al. 2012, Kimple et al. 2014, Kuhn et al. 2021, Lugo-Marín et al. 2019, Magán-Maganto et al. 2020, Morales-Hidalgo et al. 2017b, Reyes et al. 2021, Scarpa et al. 2013). Quality assessment results paralleled risk bias outcomes and demonstrated similar, moderate concern for bias. Concerns typically noted lack of information on participant flow, diagnostic knowledge and screening process, index text psychometrics, and identification of a comparison test (Table 2).
Discussion
This review of 22 studies serves to synthesize known information on the influence of Spanish language on ASD screening. Primarily Spanish-speaking individuals experience unique barriers in detection and screening for ASD. The studies included in the present review provide evidence to support the use of ASD screeners in Spanish but demonstrate some limitations, including challenges of generalizability due to variability in Spanish dialects across populations and insufficient psychometrics for some screeners. The included studies also provide insight on the implementation of Spanish screeners in healthcare settings and emphasize the relevance of client characteristics in validation of screeners (e.g. income level and education history), importance of multicultural training for providers working with Spanish-speaking clients, and the general lack of ASD knowledge and awareness noted in Spanish-speaking or Latinx populations.
However, there were limitations that must be addressed. Most evaluative studies did not report standardized translation processes, reliability and validity statistics, or factors related to accessibility and receipt of services outside of linguistic barriers. This missing information complicates replication, adoption, and dissemination of the screeners. Future research should gather the appropriate psychometric data, replicate the findings, and examine the feasibility of dissemination in settings that foster access to care. A second limitation refers to the heterogeneity of Latinx culture, which suggests that validation techniques utilized may not apply to all Latinx populations and limits generalizability. Future research must take this heterogeneity into account. With additional studies examining more representative samples, the procedures may gain the necessary empirical support for widespread use. Additionally, results regarding risk of bias and quality of assessment were mixed. Future research would benefit from the application of more rigorous research designs, like Randomized Controlled Trials and diagnostic accuracy studies, to address concerns related to bias, psychometric interpretations, and generalizability. Moreover, rigorous research designs will not have the intended impact if best-practice methods are not used to ensure cultural and linguistic relevance. The translation, adaptation, and validation (TAV) method is recommended as it differs from common translation and validation techniques (i.e. forward-back translation) and includes adaptation (DuBay et al. 2021). Without adaptation, direct translation of materials normed in English-speaking cultures will not be relevant to the heterogeneous Spanish-speaking population. A final limitation refers more to the methodological approach of the review. Although it is common to exclude grey literature (Paez 2017) in a systematic review, given that much of the work is new and less studied, some research may be captured in dissertations or conference presentations rather than published, peer-reviewed papers. Future research on this topic should consider including grey literature, especially if completing a more comprehensive analysis (e.g. a meta-analysis).
Clinical implications
The Latinx population is a diverse population with many different sub-cultural traditions, levels of multilingualism, and, in the U.S., differing layers of acculturation. Several steps can be utilized to begin moving towards linguistically and culturally-competent care for Latinx, Spanish-speaking populations. First, researchers should identify specific ASD screening and assessment measures and linguistic and cultural adaptations that have been shown to be useful and effective for this population. This review provides a first step in this process, yet much of the necessary details to build on this research was notably missing. An additional, recently published review by Alonso Esteban et al. (2020) further supports the need for a concentrated and collaborative effort to develop reliable and valid instruments for the early identification of ASD in Spanish-speaking populations at an international level. Part of this process includes simply identifying and reporting culture and language backgrounds of participants included in their research. This is necessary for informing the creation of specific Spanish-language screening and assessment measures as well as evaluation and treatment procedures included later on in the ASD diagnostic process. Second, studies evaluating the efficacy and validity of screeners must report psychometric data relevant to the validity, generalizability, and reliability of the measure. In order to provide appropriate ASD screenings to individuals, it is necessary to report suitable statistics to support those claims. Third, when examining cultural and linguistic differences in Latinx and non-Latinx populations, research recruitment must focus on building a representative sample of Latinx individuals to increase the field’s dialectical and cultural knowledge.
Conclusion
Overall, this systematic literature review demonstrates the important role Spanish language plays in the ASD screening process. Namely, language differences – especially considering the indelible relationship between language and culture – may: affect knowledge and awareness of development and developmental milestones due to a lack of available resources and supports that are linguistically- and culturally-relevant for the wide range of populations within the Latinx culture; level and ease of communication between families and providers; and result in translated resources validated for use in specific sub-groups of the heterogeneous population of Spanish-speakers potentially impacting generalizability. Additional measures may be needed to capture all concerns and symptoms. The findings from this systematic literature review provide support to improve the current ASD screening process for Spanish-speaking families. The current review provides an ideal foundation for the growing body of Latinx ASD literature and offers a source of clinically applicable information for both ASD providers and Spanish-speaking families.
Supplementary Material
Appendix A.
Data Extraction Sheet
Title of Article
Authors (last name, first/middle initials)
Year of publication
Journal
Volume/Issue #
Page numbers
Lead author contact details
Country in which the study conducted
Language(s) in which the paper was published
Aim of study
Study design
Start date
End date
Study funding sources
Possible conflicts of interest for study authors
Name of screener(s) evaluated
Reliability Statistics
Validity Statistics
Administration of screener (e.g. English version, Spanish version, translated version?)
Translation methods
Population description
Participant Type(s)
Inclusion criteria
Exclusion criteria
Country of Study Location (if possible, include geographical region [i.e. US, Midwest])
Method of recruitment of participants
Total number of participants
- Were parents included?
- Total number of parents
- Age range of parents: Youngest age
- Age range of parents: Oldest age
- Mean age of parents
- SD age of parents
- Sex: Number of females (parents)
- Sex: Number of males (parents)
- Race – parents (n, % [if possible]; please indicate if not reported)
- Ethnicity – parents (n, % [if possible]; please indicate if not reported)
- Were children included?
- Total number of children
- Age range of children: Youngest age
- Age range of children: Oldest age
- Mean age of children
- SD age of children
- Sex: Number of females (children)
- Sex: Number of males (children)
- Diagnoses of children included in the study
- Race – children (n, % [if possible]; please indicate if not reported)
- Ethnicity – children (n, % [if possible]; please indicate if not reported)
Total number of interpreters/translators
Education level of sample
Advantages of Screeners
Limitations of Screeners
Clinical implications
Funding Statement
This work was funded by National Institute of Child Health and Human Development; Center for Clinical and Translational Science, University of Alabama at Birmingham; Department of Health and Human Services Administration for Children and Families; National Institute of Child Health and Human Development; National Institutes of Health training grant through the Heart, Lung and Blood Disease Institute; Dwight David Eisenhower Transportation Fellowship Program.
Disclosure statement
No potential conflict of interest was reported by the authors.
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