A unified approach to demographic data collection for research with young children across diverse cultures.

Culture is a key determinant of children's development both in its own right and as a measure of generalizability of developmental phenomena. Studying the role of culture in development requires information about participants' demographic backgrounds. However, both reporting and treatment of demographic data are limited and inconsistent in child development research. A barrier to reporting demographic data in a consistent fashion is that no standardized tool currently exists to collect these data. Variation in cultural expectations, family structures, and life circumstances across communities make the creation of a unifying instrument challenging. Here, we present a framework to standardize demographic reporting for early child development (birth to 3 years of age), focusing on six core sociodemographic construct categories: biological information, gestational status, health status, community of descent, caregiving environment, and socioeconomic status. For each category, we discuss potential constructs and measurement items and provide guidance for their use and adaptation to diverse contexts. These items are stored in an open repository of context-adapted questionnaires that provide a consistent approach to obtaining and reporting demographic information so that these data can be archived and shared in a more standardized format. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

How do parents refer to their children while playing? A cross-linguistic comparison of parental input to Bulgarian- and English-speaking children with ASD.

Instances of person-reference, in the form of personal pronouns, names, or terms of endearment, are frequently used in child-directed speech. Examining this aspect of parental input is especially relevant to children with autism, who experience difficulties with person-reference. In this study, we compared the person-reference during parent-child interactions of Bulgarian (N=37) and English-speaking (N=37) parents of children with autism, who were matched on the language ability of their child. English-speaking parents used significantly more personal pronouns to refer to their children, while Bulgarian-speaking parents used the child's name more along with kinship terms. Furthermore, Bulgarian-speaking parents used significantly more different ways to refer to their child. These group differences were interpreted in the context of structural differences in the pronominal systems of Bulgarian and English, and in terms of culturally different discourse practices.

Diagnostic paths and service needs of children with autism spectrum disorder and with other neurodevelopmental disorders in Bulgaria.

Background: Currently, there are no official statistics about the number of children with developmental disorders in Bulgaria. This is the first systematic investigation of the needs, access to services, and priorities of families of children with developmental disorders in the country. Aims: The study aims to: (1) characterize the needs of children with developmental disorders in Bulgaria; (2) to compare the needs and access to services of children with Autism Spectrum Disorders (ASD) and other neurodevelopmental disorders (oNDD); (3) and to examine the daily burden of their caregivers and how it varies based on their demographic characteristics, such as income and education. Methods: We used an online family needs assessment survey to collect data from caregivers of children with developmental disorders in Bulgaria between April and July 2020. 195 parents of children with ASD and 73 parents of children with oNDD completed the questionnaire. Results: Children with ASD waited longer than children with oNDD to receive a diagnosis. Caregivers in the ASD group also expressed first concerns about their child's development when their children were older and for different reasons than caregivers in the oNDD group. There were no significant differences between groups in service encounters, including access to and delay of medical, counseling, and educational services, with approximately 50% of all caregivers experiencing some delay and/or difficulties in access to services. There were no associations between access to services and caregiver education and family income, with the exception of higher education being linked to receiving a diagnosis earlier for the oNDD group. Discussion: This study has three main findings: (1) children with ASD and children with oNDD in Bulgaria have different needs and paths to diagnosis; (2) nevertheless, children in both groups experience similar challenges in accessing medical, counseling, and educational services, regardless of their demographic characteristics; and (3) parents' priorities focus on education, counseling, and medical support, protecting children's basic rights, and raising awareness. A comparison of our findings to past research in the region shows a relative improvement in diagnostic services with families not having to travel outside their city to receive a diagnosis. Based on our findings, we provide specific recommendations for changes in services and policy.

Eliciting Language Samples for Analysis (ELSA): A New Protocol for Assessing Expressive Language and Communication in Autism.

Expressive language and communication are among the key targets of interventions for individuals with autism spectrum disorder (ASD), and natural language samples provide an optimal approach for their assessment. Currently, there are no protocols for collecting such samples that cover a wide range of ages or language abilities, particularly for children/adolescents who have very limited spoken language. We introduce a new protocol for collecting language samples, eliciting language samples for analysis (ELSA), and a novel approach for deriving basic measures of verbal communicative competence from it that bypasses the need for time-consuming transcription. Study 1 presents ELSA-adolescents (ELSA-A), designed for minimally and low-verbal older children/adolescents with ASD. The protocol successfully engaged and elicited speech from 46 participants across a wide range of ages (6;6-19;7) with samples averaging 20-25 min. The collected samples were segmented into speaker utterances (examiner and participant) using real-time coding as one is listening to the audio recording and two measures were derived: frequency of utterances and conversational turns per minute. These measures were shown to be reliable and valid. For Study 2, ELSA was adapted for younger children (ELSA-Toddler [ELSA-T]) with samples averaging 29 min from 19 toddlers (2;8-4;10 years) with ASD. Again, measures of frequency of utterances and conversational turns derived from ELSA-T were shown to have strong psychometric properties. In Study 3, we found that ELSA-A and ELSA-T were equivalent in eliciting language from 17 children with ASD (ages: 4;0-6;8), demonstrating their suitability for deriving robust objective assessments of expressive language that could be used to track change in ability over time. We introduce a new protocol for collecting expressive language samples, ELSA, that can be used with a wide age range, from toddlers (ELSA-T) to older adolescents (ELSA-A) with ASD who have minimal or low-verbal abilities. The measures of language and communication derived from them, frequency of utterances, and conversational turns per minute, using real-time coding methods, can be used to characterize ability and chart change in intervention research. LAY SUMMARY: We introduce a new protocol for collecting expressive language samples, ELSA, that can be used with a wide age range, from toddlers (ELSA-T) to older adolescents (ELSA-A) with autism spectrum disorder who have minimal or low-verbal abilities. The measures of language and communication derived from them, frequency of utterances and conversational turns per minute, using real-time coding methods, can be used to characterize ability and chart change in intervention research.

A Comparison of Natural Language Samples Collected From Minimally and Low-Verbal Children and Adolescents With Autism by Parents and Examiners.

Purpose We aimed to compare the speech of parents and examiners as they elicited language samples from minimally and low-verbal (MLV) children and adolescents with autism spectrum disorder (ASD), while following the same semi-structured elicitation protocol, Eliciting Language Samples for Analysis-Adolescents (ELSA-A). We also compared the speech elicited from the MLV children/adolescents by their parents at home and by trained examiners in the lab and assessed the feasibility of parents collecting language samples at home. Method Thirty-three (five female, 28 male) MLV children and adolescents with ASD between the ages of 6;6 and 19;7 (years;months) participated. All participants were administered standardized assessments, and a trained examiner collected an ELSA-A language sample from them in the lab. The parents of 22 of the children/adolescents collected an ELSA-A sample at home. All language samples were transcribed following standard procedures, and measures of expressive language were extracted to assess the quantity of speech, its syntactic complexity, and lexical diversity. At the end of the study, parents filled out a feedback survey about their experiences collecting ELSA-A. Results On average, parents produced twice as much speech as trained examiners during ELSA-A. However, their speech did not differ in syntactic complexity or lexical diversity. When with their parents, the MLV children/adolescents also produced twice as much speech than with trained examiners. In addition, their samples were more lexically diverse. Overall, parents elicited longer language samples but administered fewer of the ELSA-A activities. Nevertheless, the majority of parents rated the experience of collecting language samples at home favorably. Conclusions When parents collect language samples at home, their older MLV children/adolescents with ASD produce more speech and engage in more back-and-forth verbal interactions than when with trained examiners. Because parent-elicited language samples allow for a richer assessment of children's expressive language abilities, future studies should focus on identifying ways to encourage parents to collect data at home.