Title: Early detection of autism spectrum disorder in young isiZulu-speaking children in South Africa
Authors: Chambers, Wetherby, Stronach, Njongwe, Kauchali and Grinker
DOI: 10.1177/1362361316651196
Lay abstract: Culturally appropriate tools are needed for detecting autism spectrum disorder (ASD) in young South African children. This study focused on the early signs (known as “red flags”) of ASD in one South African group: young isiZulu-speaking children. The goals of the study were to adapt and translate existing measures for detecting early signs of ASD into isiZulu, use the measures to describe and compare behaviors of young isiZulu-speaking children with and without ASD, and compare symptoms across the different measures. After the measures were translated and adapted into isiZulu, they were used to evaluate 26 isiZulu-speaking children, 10 with ASD and 16 without ASD between 12 and 48 months of age. Results of the study showed that the children with ASD showed more ASD red flags than the non-ASD group according to both a parent-report measure and systematic ratings of red flags by people unaware of whether or not the child had ASD. There was agreement between parent reports of ASD symptoms and the observational measures of red flags. More red flags were observed during structured evaluations than naturalistic home observations of families participating in everyday activities in the ASD group. The process described in the study and the findings provide a foundation for tool translation and adaptation in South Africa and for identifying ASD in young isiZulu-speaking children.
Title: Screening for autism spectrum disorder in low- and middle-income countries: A systematic review
Authors: Stewart and Lee
DOI: 10.1177/1362361316677025
Lay abstract: This review contributes to the growing body of global autism spectrum disorder (ASD) literature by examining the use of screening instruments (i.e. tools used to identify the possible presence of ASD) in low- and middle-income countries (LMICs) with respect to study design and methodology, instrument adaptation and performance, and collaboration with community stakeholders in research. A systematic review (a high-quality literature review that involves collecting and critically analyzing all published research papers on a particular topic) was conducted to understand the use of ASD screening instruments in LMIC from studies published between 1992 and 2015. This review found that 18 different ASD screening tools have been used in low- and middle-income settings with wide ranges of effectiveness. The significant variation in the design of the studies, the methods used for screening for ASD, and the characteristics of the populations studied limit the ability of this review to make robust recommendations about which screening tools are optimal. Screening for ASD in clinical settings such as psychiatric hospitals and outpatient facilities was the most widely reported method. However, community-based screening in locations such as schools and in the home was shown to be an effective method for identifying ASD 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 performance and screening methodology, will enable the field to develop best practices for ASD screening in low-resource settings.
Title: Disparity in report of autism-related behaviors by social demographic characteristics: Findings from a community-based study in Taiwan
Authors: Tsai, Harrington, Lung and Lee
DOI: 10.1177/1362361316677024
Lay abstract: The Social Communication Questionnaire (SCQ) is a commonly used screening tool, used to identify the possible presence of autism spectrum disorder (ASD). The SCQ is a caregiver report questionnaire with 40 items based on questions from the Autism Diagnostic Interview-Revised (the ADI-R, a comprehensive interview that provides a very thorough assessment of individuals with suspected ASD). A lower-income county in Taiwan was the community in which our study was conducted. Children in selected regions of this community were screened for ASD using a translated version of the SCQ. The SCQ was distributed to 3034 school children, aged 6–8 years. Complete data were available for analysis on 2791 of these children (1339 boys and 1452 girls). Results show that boys were reported to have more autism-related behaviors than girls. This finding was true in the whole study sample as well as among children at high risk for ASD (those who scored ⩾15 on the SCQ). More behavioral issues were reported when biological fathers completed the SCQ compared to biological mothers. Caregivers with lower education levels were more likely to report clinically concerning autism-related behaviors than those with higher education levels. However, boys and girls were similar in terms of being reported as high risk for ASD in this study population. Findings from this study can help us better understand how social demographic characteristics (e.g. parental education levels) and child’s gender influence the reporting of children’s autism-related behaviors. This may lead to improved identification of behaviors such as these in the community.
Title: Translation and cultural appropriateness of the Autism Diagnostic Observation Schedule-2 in Afrikaans
Authors: Smith, Malcolm-Smith and de Vries
DOI: 10.1177/1362361316648469
Lay abstract: In South Africa, there is a growing need for valid tools to help diagnose autism spectrum disorder (ASD). The Autism Diagnostic Observation Schedule-2 (ADOS-2) is a “gold standard” ASD diagnostic tool used in South Africa. However, it is only available in English and has not been translated into the country’s other 10 official languages. We also do not know whether the ADOS-2 would be culturally appropriate for the diverse people who live in South Africa. In this study, we translated the ADOS-2 into Afrikaans, spoken by about 50% of people in the Western Cape Province of South Africa, and investigated whether it was culturally appropriate for Afrikaans-speaking “colored” families of low and middle income. We looked at the appropriateness of the language used and asked families about the appropriateness of the social interactions and activities in the ADOS-2 and about the ADOS-2 materials. Given that there was no literature on how “colored” children typically play, we started by asking 40 families questions about typical play, social interaction, and social activities in their community. We then administered the Afrikaans ADOS-2 to seven children of different language levels and asked parents, carers, and a team of researchers to tell us which aspects of the language, social interactions and activities, and materials were unusual or inappropriate to them or their children. Our results suggested that with minor modifications, the Afrikaans ADOS-2 may work in our setting. In this article, we provide guidelines for administering the Afrikaans ADOS-2 in a way that is culturally sensitive and appropriate.
Title: The diagnosis of autism and autism spectrum disorder in low- and middle-income countries: Experience from Jamaica
Authors: Samms-Vaughan, Rahbar, Dickerson, Loveland, Hessabi, Pearson, Bressler, Shakespeare-Pellington, Grove, Coore-Desai, Reece and Boerwinkle
DOI: 10.1177/1362361317698938
Lay abstract: The Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview-Revised (ADI-R) are the gold standard instruments for the diagnosis of autism spectrum disorders (ASDs) in high-income countries (HICs), both of which are administered by trained professionals. Their use requires substantial time and costs for training and administration, often not easily afforded by low- and middle-income countries (LMICs). A more easily administered questionnaire, the Childhood Autism Rating Scale (CARS), has therefore been used in LMICs, but often without assessment of its diagnostic accuracy (i.e. how well it can identify true cases of ASD). The accuracy of the CARS for diagnosis in Jamaica, an LMIC, was assessed by comparing diagnoses made with the CARS, with those made by the ADOS and Autism Diagnostic Observation Schedule-2 (ADOS-2; the second edition of the ADOS) and the ADI-R. A total of 149 children aged 2–8 years, who were previously diagnosed with autism by an experienced clinician using the CARS, were re-evaluated using the ADOS, ADOS-2, and ADI-R. There was 100% agreement between the CARS and ADOS, 98% agreement between the CARS and ADOS-2, and 94.6% agreement between the CARS and ADI-R. A diagnosis of autism on the CARS was therefore in agreement with those of the ADOS, ADOS-2, and ADI-R in a high proportion of young children. However, these results were obtained from diagnoses made by a clinician with many years of experience and with children who had a diagnosis of autism only, as the CARS does not include a classification of the milder autism spectrum. Further research with less experienced clinicians and with children who have a classification of autism spectrum is needed to fully evaluate the CARS.
Title: Age of diagnosis of autism spectrum disorder in Latino children: The case of Venezuelan children
Authors: Montiel-Nava, Chacín and González-Ávila
DOI: 10.1177/1362361317701267
Lay abstract: Studying autism spectrum disorder (ASD) in Latin-American countries is a recent development. Prior to this, pediatricians, child neurologists, and child psychologists in Latin-American countries needed to rely on research conducted in other countries. In most studies carried out in the United States, Latino children are diagnosed with ASD later in life than non-Latino children. They also usually have more severe symptoms and lower IQs. It has been suggested that lower levels of parental education, lower socioeconomic status (SES), and limited parental knowledge of ASD and healthcare could be responsible for a later diagnosis in Latino children. The goal of the study was to describe the age at which parents first had concerns about their children’s development and behavior and also which factors were associated with age at diagnosis in a sample of Venezuelan children. Information was collected from 103 children with ASD between the ages of 2 and 7 years. Even though parents were aware of developmental difficulties at 17 months, the professional ASD diagnosis (by a specialist) was received much later (on average, between 4 and 5 years of age). Parents were aware that their children were developing differently when comparing to other children before the age of 2 years, but their children tended to be diagnosed about 3 years later (which is consistent with data from other countries). For clinicians, it is important to notice any potential signs of ASD as early as possible. A better understanding of cultural influences on the age of diagnosis may translate to better services, which are independent of ethnicity.
Title: Service system and cognitive outcomes for young children with autism spectrum disorders in a rural area of Taiwan
Authors: Chu, Chiang, Wu, Hou and Liu
DOI: 10.1177/1362361316664867
Lay abstract: Early intervention (EI) services do important work for children with autism spectrum disorders (ASDs) and developmental delay (DD), as well as their families. However, it is unclear how families use EI services in rural areas and what the impact of EI is for them. Chiayi is a rural county located in southwestern Taiwan and has only one EI Reporting and Referral Center offering resources and consultations. We surveyed the use of EI for families living in this rural area. A total of 71 children were recruited into the study: 35 children with ASDs and 36 children with DD. The children were recruited when they were 2.5 years old and were followed up when they were 4 years old. Results showed relatively low and varied use of EI services for both groups during the period. There was also a relative lack of EI programs specific for children with ASDs. Due to a lack of resources for comprehensive EI programs for children with ASDs, parents had to seek different resources by themselves. Although the accessibility and use of EI services was limited, it was found that cognitive abilities did increase for both the ASD and DD groups (from when they were aged 2.5 years to when they were aged 4 years). However, for children with DD only, parental socioeconomic status and preschool experiences also seemed to play a critical role in their development; possibly, parents who had higher socioeconomic status could afford to access services (e.g. preschool).
Title: Services for children with autism in the Kingdom of Saudi Arabia
Authors: Alnemary, Aldhalaan, Simon-Cereijido and Alnemary
DOI: 10.1177/1362361316664868
Lay abstract: Little information is available about the existing services in the field of autism spectrum disorders (ASDs) in Saudi Arabia, although this is an emerging area. We evaluated whether characteristics of the family, the child, or the services themselves predicted (1) the age when children started receiving services and (2) the number of non-medical treatments (e.g. speech and play therapy), biomedical treatments (e.g. vitamins and supplements and special diets) and cultural/religious treatment (e.g. honey diet and religious/traditional healers). We found that, on average, children began using services by the age of 3.3 years. The age at the initiation of services increased for older children and those who were diagnosed later, while it decreased for children of mothers with a 4-year college degree or higher. Most children received non-medical treatments, followed by biomedical treatments and then cultural/religious treatment. The number of non-medical treatments decreased for children who lived in households with low incomes, while it increased for children who received at least one treatment in a different country, received more biomedical treatments, and resided in a major city. The number of biomedical treatments decreased for children who received services only at their city of residence, had a father educated to high school level or below, and those who had parents with more knowledge about social communication in ASD. The number of biomedical treatments increased, however, for those who were older, had odd play in the first 2 years of life, received at least one intervention in different country, received more non-medical and/or cultural/religious treatments, and had parents with more knowledge about ASD symptoms. The number of cultural/religious treatments increased for children of mothers without a college degree and decreased for children whose parents had more knowledge about social communication in ASD. These results have implications for the development of policies and interventions that can mitigate the paucity of services for children with ASD in Saudi Arabia.
Title: Procedures and compliance of a video modeling applied behavior analysis intervention for Brazilian parents of children with autism spectrum disorders
Authors: Bagaiolo, Mari, Bordini, Ribeiro, Martone, Caetano, Brunoni, Brentani and Paula
DOI: 10.1177/1362361316677718
Lay abstract: Applied behavior analysis (ABA) is one of the most widely used interventions for children with autism spectrum disorder (ASD). However, ABA is very specialized, expensive, and time-consuming. It is, therefore, not a feasible intervention for many, particularly those in low- to middle-income countries. Thus, video modeling (a mode of teaching using video recordings to provide a visual model) may be a good strategy to teach parents to help improve the social skills of their ASD children. Conducted in São Paulo city, Brazil, the main objectives of this study were as follows: (1) to develop videos with the aim of improving eye contact and joint attention, and decreasing disruptive behaviors, in children with ASD; (2) to provide information on this method as a low-cost parental training intervention; and (3) to assess participant’s adherence to the study (i.e. the extent to which they completed the protocol, as described). The parental training intervention was delivered over 22 weeks based on video modeling. Participants were 67 parents who had a 3- to 6-year-old child with ASD and intellectual disability. They were randomly allocated into one of the two groups: 34 were in an “intervention” group and received the parent training intervention delivered via video modeling (i.e. parents received videos to learn how to teach their children) and 33 were in a “control” group who did not receive this intervention. During the course of the study, 14 videos were recorded covering the management of disruptive behaviors, how to effectively “prompt” the child, how to determine a child’s preference for one item over another, how to improve eye contact, and how to support joint attention. We evaluated how well parents completed the intervention as specified (referred to as “adherence”), and the findings were as follows: good adherence = 32.4% of parents; reasonable adherence = 38.2% of parents; low adherence = 5.9% of parents; and no adherence = 23.5%. One of the main conclusions of this study is that video modeling parental training seems a promising, feasible, and low-cost way to deliver care for children with ASD, particularly for populations with scarce treatment resources. A clinical trial—evaluating how well the intervention works at improving social skills and reducing disruptive behaviors in children with ASD—is now underway.
Title: Lessons learned while developing, adapting, and implementing a pilot parent-mediated behavioral intervention for children with autism spectrum disorder in rural Bangladesh
Authors: Blake, Rubenstein, Tsai, Rahman, Rieth, Ali and Lee
DOI: 10.1177/1362361316683890
Lay abstract: Specialized services are rarely accessible or affordable for children with autism spectrum disorder (ASD) in low- and middle-income countries (LMICs). LMICs often have limited resources, underdeveloped health systems, and scarce knowledge of ASD. These limitations make it difficult to create services for children with ASD in these locations. This study aimed to develop and adapt materials for a community-based parent-delivered behavioral intervention in rural Gaibandha, Bangladesh as well as to train a native clinician to implement the intervention. Intervention materials to support parents’ use of behavioral strategies were developed and refined by US behavioral intervention experts and Bangladesh field experts. Study investigators trained a native child psychologist on the topics of child developmental milestones and behavioral intervention techniques. The native clinician then delivered a 1-day group education session attended by 10 families of children aged 7–9 years with ASD. The group education session was followed by two one-on-one training sessions with each family to train and practice strategies to address their child’s specific challenging behaviors. Initial results indicate the importance of materials that are culturally appropriate and at an understandable literacy level for the parents. All families expressed strong desires to have learned the behavioral strategies when their child was younger. Families also voiced their need for further support and tools to help their children in the future. This study is a first step to creating sustainable and low-cost ASD interventions in rural Bangladesh and possibly for families in other regions with similar cultural and socioeconomic backgrounds.
Title: Lessons learned: Engaging culturally diverse families in neurodevelopmental disorders intervention research
Authors: Ratto, Anthony, Pugliese, Mendez, Safer-Lichtenstein, Dudley, Kahn, Kenworthy, Biel, Martucci and Anthony
DOI: 10.1177/1362361316650394
Lay abstract: Low-income and ethnic minority families have significant difficulties accessing specialty healthcare for neurodevelopmental conditions, such as autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD). These families are also much less likely to be included in research on ASD and ADHD, meaning that little is known about how to best support children with ASD and ADHD and their families who come from low-income and ethnic minority communities. In particular, there are currently no published studies on how to adapt treatments for ASD for low-income Latino communities and few studies on how to adapt treatments for children with ADHD in these communities. This article describes the strategies used and adaptations made by our research team to recruit and engage low-income, ethnic minority families (particularly Latino families) of children with ASD and ADHD as part of a study on two school-based programs to help children with ASD and ADHD be more flexible in their thinking and behavior. This article also discusses the lessons learned along the way and changes we made to our initial strategies to better reach these families. Some of the key strategies used include developing relationships with families, including community members as part of the research team, working closely with schools, offering convenient appointment times and locations, and helping families learn more about ASD and ADHD.
