Autism

Culturally appropriate tools are needed for detecting symptoms of autism spectrum disorder in young South African children. The objectives of this study were to (1) adapt and translate into isiZulu existing measures for detecting early signs of autism spectrum disorder, (2) use the measures to characterize and compare behavioural profiles of young isiZulu-speaking children with and without autism spectrum disorder and (3) compare symptom profiles across sampling procedures. Measures were translated and adapted into isiZulu and used to evaluate 26 isiZulu-speaking children, 15 children with no reported developmental concerns and 11 referred for suspected autism spectrum disorder. A video-recorded observation of children and caregivers in their home environment was also made. Based on best-estimate diagnoses, 10 children were classified as autism spectrum disorder and 16 as non-autism spectrum disorder. The children with autism spectrum disorder presented with significantly more autism spectrum disorder red flags than the non-autism spectrum disorder group according to parent report and systematic ratings of red flags. Significant correlations between parent report and observational measures of red flags were observed. More red flags were observed during structured evaluations than home observations in the autism spectrum disorder group. Findings provide a foundation for tool translation and adaptation in South Africa and identifying social communication markers to detect autism spectrum disorder in young isiZulu-speaking children.

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.

The Social Communication Questionnaire is one of the most commonly used screening tools for autism spectrum disorder. The Social Communication Questionnaire is a caregiver-reported questionnaire with 40 items based on questions from the Autism Diagnostic Interview–Revised. This study collected Social Communication Questionnaire data from a community-based, multi-stage case identification design epidemiologic study in one socioeconomically disadvantaged county in Taiwan. The Social Communication Questionnaire was distributed to 3034 school children, aged 6–8 years. Item prevalence results indicate males were reported to have more autism-related behaviors than females (higher prevalence on most items), in the whole study sample as well as in children meeting Social Communication Questionnaire clinical cut-offs (⩾15). Children whose biological fathers completed the Social Communication Questionnaire were reported to have more behavioral issues than children whose biological mothers were the respondent. Lower respondent education levels were associated with reports of clinically concerning autism-related behaviors. However, males were not at higher risk of meeting Social Communication Questionnaire clinical cut-offs than females in this study population. Findings from this study help to better understand reporting patterns on children’s autism-related behaviors potentially due to social demographic characteristics and child sex, which may lead to improved identification of these behaviors.

Autism Diagnostic Observation Schedule-2 is the ‘gold standard’ autism spectrum disorder observational assessment, and it is increasingly used in South Africa. However, its use is limited to English speakers, as it has not been translated into the country’s other 10 official languages. Moreover, the cultural appropriateness of this tool has not been explored in South Africa. The Autism Diagnostic Observation Schedule-2 was translated into Afrikaans and assessed for cultural appropriateness to the ‘coloured’ population from low-middle socioeconomic status backgrounds in the Western Cape Province. Using a mixed-methods approach, three components associated with method bias in the Autism Diagnostic Observation Schedule-2 were investigated: language used, social interactions and activities, and materials. An ethnographic investigation of play, social interaction and social activities was conducted in a community sample (n = 40), and the Afrikaans Autism Diagnostic Observation Schedule-2 was pre-piloted in a clinical sample (n = 7). Results highlighted unique aspects of the language (‘Kaaps’) that need to be considered during Autism Diagnostic Observation Schedule-2 administration. The social interaction demands of the Autism Diagnostic Observation Schedule-2 appeared appropriate, and sufficient familiarity with Autism Diagnostic Observation Schedule-2 materials and activities was found to support the use of the Autism Diagnostic Observation Schedule-2. Guidelines for administration of the Autism Diagnostic Observation Schedule-2 to this population were generated to improve cultural sensitivity and cultural appropriateness and to reduce method bias.

The administration requirements of the Autism Diagnostic Observation Schedule and the Autism Diagnostic Interview–Revised, widely used in high-income countries, make them less feasible for diagnosis of autism spectrum disorder in low- and middle-income countries. The flexible administration requirements of the Childhood Autism Rating Scale have resulted in its use in both high-income countries and low- and middle-income countries. This study examines the agreement between assessments using the Childhood Autism Rating Scale with those using the Autism Diagnostic Observation Schedule or Autism Diagnostic Observation Schedule, Second Edition and Autism Diagnostic Interview–Revised in Jamaica. Children aged 2–8 years (n = 149) diagnosed with autism by an experienced clinician using the Childhood Autism Rating Scale were re-evaluated using the Autism Diagnostic Observation Schedule and Autism Diagnostic Interview–Revised. The proportion diagnosed with autism spectrum disorder using the Autism Diagnostic Observation Schedule, Autism Diagnostic Observation Schedule, Second Edition, and Autism Diagnostic Interview–Revised was determined and mean domain scores compared using analysis of variance (ANOVA). The mean age was 64.4 (standard deviation = 21.6) months; the male:female ratio was 6:1. The diagnostic agreement of the Childhood Autism Rating Scale with the Autism Diagnostic Observation Schedule and Autism Diagnostic Observation Schedule, Second Edition was 100.0% and 98.0%, respectively. Agreement with the Autism Diagnostic Interview–Revised was 94.6%. Domain scores were highest for children with more severe symptoms (p < 0.01). Despite a high level of agreement of the Childhood Autism Rating Scale with the Autism Diagnostic Observation Schedule, Autism Diagnostic Observation Schedule, Second Edition, and Autism Diagnostic Interview–Revised, the Childhood Autism Rating Scale should be evaluated further with a broader range of autism spectrum disorder symptomatology, and by clinicians with varying experience before recommendation for use in low- and middle-income countries.

Latino children are diagnosed with autism spectrum disorder later in life, usually with more severe symptoms, and lower IQs, compared with non-Latino children. Possible reasons for such disparities could be due to lower levels of parent education, lower socioeconomic status, limited knowledge of parents about autism spectrum disorder, and diminished health-care knowledge. The goal of the study was to describe the age of parental concerns and at first autism spectrum disorder diagnosis, and factors associated with age at the first diagnosis in a sample of Venezuelan children. Diagnostic and demographic data were collected from 103 children between 2 and 7 years of age. Although the mean age of first concerns was 17 months, the age of diagnosis varied from 53.03 months for the Pervasive Developmental Disorders–Not Otherwise specified group to 54.38 months for the autism group. Although parents were aware of developmental difficulties before the second year of life, their children were diagnosed 36 months later. In Latin cultures, behavior problems are usually attributed to poor parenting skills, so parents might take longer to seek professional help. A better understanding of cultural influences on age of diagnosis will translate to quicker use of services independent of ethnicity.

Chiayi is a rural county located in southwestern Taiwan, and the effectiveness of its early intervention service system for autism spectrum disorders was studied in detail. A total of 71 children with autism spectrum disorders (n = 35) and developmental delay (n = 36) aged 2.5 years were referred from the only Early Intervention Reporting and Referral Center in Chiayi and followed up at 4 years. Results showed relatively low and varied services of early intervention for both groups during two time-point periods and a relative lack of specific early intervention programs for children with autism spectrum disorders. It was found, however, that cognitive abilities were increased for autism spectrum disorders and developmental delay groups. Additionally, the Early Learning Score at the initial evaluation could contribute to the high learner autism spectrum disorders subgroup. Parental socio-economic level was also determined to benefit the high learner developmental delay subgroup.

Little information is available about autism spectrum disorder services in the Kingdom of Saudi Arabia. A sample of 205 parents completed an online survey about the use of autism spectrum disorder services for their children. The results revealed that on average, children began services by 3.3 years. Most parents reported utilizing non-medical treatments followed by biomedical treatments and cultural and religious treatment. The age at the initiation of services and the type of treatments used differed by parent’s income, educational attainment, the extent of knowledge about autism spectrum disorders, and geographic location. Some child characteristics also influenced the use of services. The disparities in service utilization in Saudi Arabia point to the need to develop policy and interventions that can mitigate the paucity of services for children with autism spectrum disorders. More research is needed to better understand service use and the decision-making processes that underlie treatment selection by parents of children with autism spectrum disorders in the Kingdom of Saudi Arabia.

Video modeling using applied behavior analysis techniques is one of the most promising and cost-effective ways to improve social skills for parents with autism spectrum disorder children. The main objectives were: (1) To elaborate/describe videos to improve eye contact and joint attention, and to decrease disruptive behaviors of autism spectrum disorder children, (2) to describe a low-cost parental training intervention, and (3) to assess participant’s compliance. This is a descriptive study of a clinical trial for autism spectrum disorder children. The parental training intervention was delivered over 22 weeks based on video modeling. Parents with at least 8 years of schooling with an autism spectrum disorder child between 3 and 6 years old with an IQ lower than 70 were invited to participate. A total of 67 parents fulfilled the study criteria and were randomized into two groups: 34 as the intervention and 33 as controls. In all, 14 videos were recorded covering management of disruptive behaviors, prompting hierarchy, preference assessment, and acquisition of better eye contact and joint attention. Compliance varied as follows: good 32.4%, reasonable 38.2%, low 5.9%, and 23.5% with no compliance. Video modeling parental training seems a promising, feasible, and low-cost way to deliver care for children with autism spectrum disorder, particularly for populations with scarce treatment resources.

Low- and middle-income countries often have limited resources, underdeveloped health systems and scarce knowledge of autism spectrum disorder. The objectives of this preliminary study were to develop and adapt intervention materials and to train a native clinician to implement a community-based parent-mediated behavioural intervention in rural Gaibandha, Bangladesh. Intervention materials to support parents’ use of behavioural strategies were developed and refined by US behavioural intervention experts and Bangladesh field experts. Study investigators trained a native child psychologist in developmental milestones and behavioural intervention techniques. The native clinician delivered a 1-day group education session attended by 10 families of children aged 7–9 years with autism spectrum disorder, followed by two one-on-one training sessions with each family to train and practice individualized strategies for targeted challenging behaviours. Preliminary qualitative results indicate the importance of materials that are culturally appropriate and at an adequate literacy level. All families expressed strong desires to have learned the behavioural strategies when their child was younger and vocalized their need for further support and tools to help their children. This study is a preliminary step to creating sustainable and low-cost autism spectrum disorder interventions in rural Bangladesh, and possibly for families in regions with similar cultural and socioeconomic status backgrounds.

Low-income and ethnic minority families continue to face critical disparities in access to diagnostic and treatment services for neurodevelopmental conditions, such as autism spectrum disorder and attention deficit hyperactivity disorder. Despite the growing cultural diversity of the United States, ethnic minority children and families continue to be substantially underrepresented across research on neurodevelopmental disorders, and there is a particularly concerning lack of research on the treatment of these conditions in low-income and ethnic minority communities. Of note, there are currently no published studies on adapting autism spectrum disorder treatment for low-income Latino communities and relatively few studies documenting adapted treatments for children with attention deficit hyperactivity disorder in these communities. This article describes methodological considerations and adaptations made to research procedures using a Diffusion of Innovation framework in order to effectively recruit and engage low-income, ethnic minority, particularly Latino, families of children with neurodevelopmental disorders, in a comparative effectiveness trial of two school-based interventions for executive dysfunction.