Sheri T. Stronach

“Communities” in Community Engagement: Lessons Learned From Autism Research in South Korea and South Africa

Little research has been conducted on behavioral characteristics of children with autism spectrum disorder (ASD) from diverse cultures within the US, or from countries outside of the US or Europe, with little reliable information yet reported from developing countries. We describe the process used to engage diverse communities in ASD research in two community‐based research projects—an epidemiologic investigation of 7‐ to 12‐year olds in South Korea and the Early Autism Project, an ASD detection program for 18‐ to 36‐month‐old Zulu‐speaking children in South Africa. Despite the differences in wealth between these communities, ASD is underdiagnosed in both settings, and generally not reported in clinical or educational records. Moreover, in both countries, there is low availability of services. In both cases, local knowledge helped researchers to address both ethnographic as well as practical problems. Researchers identified the ways in which these communities generate and negotiate the cultural meanings of developmental disorders. Researchers incorporated that knowledge, as they engaged communities in a research protocol, adapted and translated screening and diagnostic tools, and developed methods for screening, evaluating, and diagnosing children with ASD. Autism Res 2012, 5: 201–210.

Lexical and Grammatical Skills in Toddlers on the Autism Spectrum Compared to Late Talking Toddlers

This study compared language development in 30-month-old toddlers on the autism spectrum and 25-month-old late talking toddlers without autism. Groups were matched on overall productive vocabulary (and nonverbal cognition was controlled) in order to compare language acquisition patterns related to vocabulary composition and early lexical–grammatical relationships. Findings revealed that semantic categories of words—including psychological state terms—used by toddlers on the autism spectrum were very similar to those of late talkers. Both groups were equivalent with respect to grammatical complexity and proportion of toddlers combining words, though late talkers displayed a relatively stronger association between lexical–grammatical abilities. These tentative findings are consistent with a dimensional account of early, core linguistic abilities across different populations of children with language delay.

Communities in Community Engagement

Little research has been conducted on behavioral characteristics of children with autism spectrum disorder (ASD) from diverse cultures within the US, or from countries outside of the US or Europe, with little reliable information yet reported from developing countries. We describe the process used to engage diverse communities in ASD research in two community‐based research projects—an epidemiologic investigation of 7‐ to 12‐year olds in South Korea and the Early Autism Project, an ASD detection program for 18‐ to 36‐month‐old Zulu‐speaking children in South Africa. Despite the differences in wealth between these communities, ASD is underdiagnosed in both settings, and generally not reported in clinical or educational records. Moreover, in both countries, there is low availability of services. In both cases, local knowledge helped researchers to address both ethnographic as well as practical problems. Researchers identified the ways in which these communities generate and negotiate the cultural meanings of developmental disorders. Researchers incorporated that knowledge, as they engaged communities in a research protocol, adapted and translated screening and diagnostic tools, and developed methods for screening, evaluating, and diagnosing children with ASD. Autism Res 2012, 5: 201–210.

Theory of mind and use of cognitive state terms by adolescents with traumatic brain injury

Background: There is growing evidence of impaired social cognition in individuals with traumatic brain injury (TBI). Social cognition tests, however, place demands on domain‐general cognitive functions such as auditory working memory, so that test scores might reflect the influence of these factors on test performance rather than domain‐specific social cognition impairments. As an alternative, we examined conversations of adolescents with TBI for evidence of cognitive state terms. This work was completed in partial fulfilment of the requirements for a Master of Science Degree at the University of Wisconsin. The first author wishes to thank the members of her thesis committee, Dr Jon Miller, Dr Nadine Connor, and Dr Julia Evans; and also the SALT transcription laboratory members. This work was supported in part by Grant DC00163 from the National Institute on Deafness and Other Communication Disorders and funding from the Wisconsin Alumni Research Fund, to Dr Turkstra. Methods and Procedures: Participants were 16 adolescents with TBI, who were divided into two groups (TBI‐Low and TBI‐High) based on scores on a test of theory of mind (ToM), and 8 typically developing (TD) adolescents matched to participants in the TBI groups for age and race. Each participant completed a 3‐minute conversation with a peer or researcher partner, and conversations were analysed to determine the number of cognitive state terms relative to total words produced. Outcomes and Results: The TBI‐Low group expressed significantly fewer cognitive state terms and significantly fewer self‐ vs other‐referenced terms than either the TBI‐High or TD group. There was no significant difference between the TD and TBI‐High groups. The findings were not related to generally impoverished language in the TBI‐Low group, as the three groups were similar on measures of lexical diversity. Conclusions: The findings support the hypothesis that adolescents with TBI have domain‐specific deficits in social cognition, beyond what might be accounted for by the cognitive demands of social cognition tests. Given the relation of social cognitive ability to important life outcomes, these skills should be included in the evaluation of individuals with cognitive‐communication disorders after TBI.

Examining restricted and repetitive behaviors in young children with autism spectrum disorder during two observational contexts

This prospective study of the FIRST WORDS® Project examined restricted and repetitive behaviors in a sample of 55 toddlers at a mean age of 20 months who were later diagnosed with autism spectrum disorder. Restricted and repetitive behaviors were coded using the Repetitive Movement and Restricted Interest Scales in two video-recorded observation methods–structured sampling procedures in a clinic and naturalistic everyday activities at home. Measures of restricted and repetitive behaviors were higher in the clinic setting than in the home observation, especially for behaviors involving object use. Repetitive movements with objects in the clinic predicted nonverbal developmental scores and Autism Diagnostic Observation Schedule social affect scores at later follow-up. In contrast, repetitive movements with objects at home significantly predicted later Autism Diagnostic Observation Schedule restricted and repetitive behaviors scores. These results support the utility of the Repetitive Movement and Restricted Interest Scales to detect restricted and repetitive behaviors in toddlers and suggest that observations of restricted and repetitive behaviors in clinic and home settings may provide unique and important diagnostic information for improving early detection of autism spectrum disorder.

Psychometric analysis of the Systematic Observation of Red Flags for autism spectrum disorder in toddlers

The purpose of this study was to examine the utility of the Systematic Observation of Red Flags as an observational level-two screening measure to detect risk for autism spectrum disorder in toddlers when used with a video-recorded administration of the Communication and Symbolic Behavior Scales. Psychometric properties of the Systematic Observation of Red Flags were examined in a sample of 247 toddlers of 16- to 24 months old: 130 with autism spectrum disorder, 61 with developmental delays, and 56 typically developing. Individual items were examined for performance to create an algorithm with improved sensitivity and specificity, yielding a total Composite score and Domain scores for Social Communication and Restricted Repetitive Behaviors. Codes indicating clear symptom presence were collapsed to yield a count of the number of Red Flags for the overall scale and each symptom domain. Results indicated significant group differences with large effects for the Composite, both Domain scores, and Red Flags score, and good discrimination (area under the curve = 0.84–0.87) between autism spectrum disorder and nonspectrum groups for the Composite, Social Communication Domain, and Social Communication Red Flags score. The Systematic Observation of Red Flags provides an observational screening measure for 16- to 24-month-olds with good discrimination, sensitivity, and specificity. A cutoff of 20 on the Composite is recommended to optimally detect autism spectrum disorder risk.

Early detection of autism spectrum disorder in young isiZulu-speaking children in South Africa

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.

Observed and Parent-Report Measures of Social Communication in Toddlers With and Without Autism Spectrum Disorder Across Race/Ethnicity

Purpose This study investigated whether measures of early social communication vary among young children of diverse racial/ethnic status with and without autism spectrum disorder (ASD). Method Participants were 364 toddlers between ages 18 and 36 months with a diagnosis of ASD confirmed (n = 195) or ruled out (n = 169), from 3 racial/ethnic categories: non-Hispanic White (n = 226), non-Hispanic Black (n = 74), and Hispanic (n = 64). Group differences in social communication were examined using an observational measure-the Communication and Symbolic Behavior Scales Behavior Sample (CSBS-BS; Wetherby & Prizant, 2002)-and a parent-report measure, the Early Screening for Autism and Communication Disorders (Wetherby, Woods, & Lord, 2007). Results Controlling for maternal education, children with ASD scored significantly lower on the CSBS-BS than children without, indicating poorer social communication skills, and higher on the Early Screening for Autism and Communication Disorders, indicating more ASD features. Racial/ethnic groups did not differ on 6 CSBS-BS clusters, but Non-Hispanic White toddlers scored significantly higher than both other groups on the Understanding cluster. There were no significant Diagnosis × Race/Ethnicity interactions. Conclusion These findings indicate good agreement between observed and parent-report measures in this sample. Results suggest that the CSBS-BS and Early Screening for Autism and Communication Disorders could be viable tools in the detection process for toddlers with ASD in these racial/ethnic groups.

Performance of South African Children on the Communication and Symbolic Behavior Scales--Developmental Profile (CSBS DP).

BACKGROUND Substantial development in social communication skills occurs in the first two years of life. Growth should be evident in sharing emotion and eye gaze; rate of communication, communicating for a variety of functions; using gestures, sounds and words; understanding language, and using functional and pretend actions with objects in play. A delay in these early social communication skills may be the first sign of a developmental delay in young children in nearly all categories of disabilities-including specific language impairment, autism spectrum disorder, HIV/AIDS, lack of environmental stimulation or institutionalization, and global developmental delays-and early detection of these delays is critical for enrolment in appropriate early intervention services. AIMS No standardized tests of early social communication skills exist for very young children in South Africa (SA). An existing evaluation tool that has the potential to be culturally fair for children from cultural backgrounds different to the standardization group is the Communication and Symbolic Behaviour Scales-Developmental Profile (CSBS DP). This study aimed to document the performance of a group of English-speaking SA children ranging in age from 12 to 24 months on the CSBS DP and to compare this performance with the original standardization sample. METHODS & PROCEDURES Sixty-seven English-speaking SA children from a range of cultural and linguistic backgrounds were assessed on the CSBS DP Behaviour Sample. Group scores were compared with the original standardization sample using inferential statistics. OUTCOMES & RESULTS The results provide preliminary support for the suitability and validity of the face-to-face Behaviour Sample as a measure of early social communication skills in this sample of English-speaking SA children from a range of cultural groups between 12 and 24 months of age. CONCLUSIONS & IMPLICATIONS While further research in the SA population is needed, these findings are a first step towards validating a culturally appropriate measure for early detection of social communication delays in a sample of SA toddlers.

Other health professions

Children and adults with intellectual and developmental disabilities (IDD) should live healthy, safe and fully integrated lives in communities of their choice. Many professionals are involved in support and services to cater to individual needs and what is most important, support their family and the members of their support network. People who have IDD also often have co-occurring disorders that result in complex needs and support. Primary health care providers need to understand the professions, educational backgrounds and roles of the many other professionals that are a part of an individual’s health, allied health and broad support team. This chapter is designed to provide this important information about the most common professions that deliver services and support to people with IDD.