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Tele-assessment of autism in early childhood has increased. However, it is unclear how autism screening tools (M-CHAT-R, DCI) function as part of tele-assessment and relate to a commonly used tele-assessment instrument, the TAP. 361 families from a clinically referred sample of children (mean age: 27.63 months, sd = 4.86 months) completed the M-CHAT-R and DCI prior to a tele-assessment visit utilizing the TAP. Data was collected on demographic background, measure scores, and diagnostic outcome. No significant differences in measure scores or diagnostic findings emerged in age at referral, age group, age at diagnosis, or child sex, ethnicity, or racial background. The M-CHAT-R and DCI correlated strongly and positively. Older age was associated with lower risk scores on screening instruments. Children with autism had significantly higher scores on all screener and subdomain scores, with the exception of DCI Behavior. Subdomains of the DCI emerged as the strongest predictor of diagnostic outcome. Both the DCI total score and the M-CHAT-R significantly related to diagnostic outcome and TAP score in this tele-assessment model, regardless of child age or sex. Findings also support use of the DCI for children under 24 months of age.
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BACKGROUND: The 2020-2029 strategic plan for the Patient-Centered Outcomes Research Trust Fund calls for addressing data infrastructure gaps that are critical for studying issues around intellectual and developmental disabilities (I/DD). Specifically, the plan calls for data collection on economic factors that affect person-centered approaches to health care decision-making. Among people with I/DD and their caregivers, such economic factors may include financial costs of care, decreased opportunities for leisure and recreation, income losses associated with caregiving, and foregone opportunities for skill acquisition or other human capital investments. OBJECTIVE: This commentary supports responsiveness to the Patient-Centered OutcomesResearch Trust Fund (PCORTF) calls by conceptualizing and operationalizing a framework for identifying preferences on economic factors that are relevant to people with I/DD and their caregivers. MAIN ARGUMENTS: The framework outlined in this commentary addresses barriers to data collection that hinder measure development in the study of I/DD. This work is significant and timely given the continued movement to integrate and maintain people with I/DD within communities and recent methodological advances for eliciting preferences among people with I/DD. RELEVANCE TO THE SPECIAL ISSUE: Readers will be introduced to a framework for building data capacity in the study of economic outcomes among a population that is a high research priority for federal funding agencies. This commentary aims to be useful to researchers in planning, developing, and initiating projects in this area.
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Cuidadores , Discapacidad Intelectual , Humanos , Niño , Discapacidades del Desarrollo , Recolección de Datos , Factores EconómicosRESUMEN
OBJECTIVE: Understanding families' experiences from their initial developmental concerns through the first several months after autism spectrum disorder (ASD) diagnosis might help explain persistent disparities in age of diagnosis for low-income Latino children and those whose parents speak a primary language other than English. We explored these experiences among Latino parents of children recently diagnosed with ASD to develop a richer understanding of this critical juncture. METHOD: We conducted semistructured interviews with Latino parents of children diagnosed with ASD in the previous 3 months who were receiving follow-up care through a large, hospital-based outpatient practice. Interviews were recorded, transcribed verbatim, translated, and analyzed using an iterative process. RESULTS: Twenty parents participated in a semistructured interview approximately 3 months after their child was diagnosed with ASD. All respondents were female and Latina, 90% spoke Spanish, and 95% of children received Medicaid. We identified the following 3 themes from their experiences: (1) When parents first shared their concerns about their child's development with professionals, they felt unheard. (2) Parents were surprised that the diagnostic process for ASD relied on parental description of child development and behavior and observation of the child, not on medical tests. (3) Receiving an ASD diagnosis was a life-altering event for parents, and how that diagnosis was communicated by clinicians had a significant impact on families. CONCLUSION: Parents of young Latino children identified several barriers throughout the process of ASD identification and diagnosis that have important implications for improving clinician communication with families.
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Trastorno del Espectro Autista , Trastorno del Espectro Autista/diagnóstico , Niño , Femenino , Hispánicos o Latinos , Humanos , Lenguaje , Padres , Población BlancaRESUMEN
BACKGROUND: Persistent disparities exist in early identification of autism spectrum disorder (ASD) among children from low-income families who are racial and/or ethnic minorities and where English is not the primary language. Parental literacy and level of maternal education may contribute to disparities. The Developmental Check-In (DCI) is a visually based ASD screening tool created to reduce literacy demands and to be easily administered and scored across settings. In a previous study, the DCI showed acceptable discriminative ability between ASD versus non-ASD in a young, underserved sample at high-risk for ASD. In this study, we tested the DCI among an unselected, general sample of young underserved children. METHODS: Six hundred twenty-four children ages 24 to 60 months were recruited through Head Start and Early Head Start. Parents completed the DCI, Modified Checklist for Autism in Toddlers, Revised with Follow-Up, and Social Communication Questionnaire. Children scoring positive on any measure received evaluation for ASD. Those screening negative on both Modified Checklist for Autism in Toddlers, Revised with Follow-Up and Social Communication Questionnaire were considered non-ASD. RESULTS: Parents were primarily Hispanic, reported high school education or less, and had public or no insurance. The DCI demonstrated good discriminative power (area under the curve = 0.80), performing well across all age groups, genders, levels of maternal education, primary language, and included ethnic and racial groups. Item-level analyses indicated that 24 of 26 DCI items discriminated ASD from non-ASD. CONCLUSIONS: The DCI is a promising ASD screening tool for young, underserved children and may be of particular value in screening for ASD for those with low literacy levels or with limited English proficiency.
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Trastorno del Espectro Autista/diagnóstico , Lista de Verificación , Barreras de Comunicación , Etnicidad , Alfabetización , Grupos Minoritarios , Encuestas y Cuestionarios , Trastorno del Espectro Autista/etnología , Preescolar , Diagnóstico Precoz , Intervención Educativa Precoz , Escolaridad , Femenino , Disparidades en Atención de Salud , Humanos , Masculino , Tamizaje Masivo , New Jersey , Pobreza , Poblaciones VulnerablesRESUMEN
Early identification of children at risk for autism spectrum disorder (ASD) is critical to promote optimal outcomes. However disparities in early recognition of ASD based on race, ethnicity, income, and English proficiency persist. Little is known regarding how parents from these groups describe concerns. The study aim was to understand how parents of children from underserved backgrounds at developmental risk describe concerns about child development and behavior. To address this gap, developmental concerns of 204 parents of children at-risk for ASD from underserved communities were analyzed. In this sample, the number and type of parental concerns differed based on parent primary language but not the presence of ASD or ethnicity. Parents whose primary language was Spanish were less likely to express concerns about their child's development or to express ASD-specific concerns. These findings have implications for how clinicians elicit and interpret developmental concerns from underserved families.
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Trastorno del Espectro Autista , Trastorno Autístico , Trastorno del Espectro Autista/epidemiología , Niño , Preescolar , Etnicidad , Humanos , PadresRESUMEN
Children with autism spectrum disorder from low-income, minority families or those with limited English proficiency are diagnosed at a later age, or not at all, compared with their more advantaged peers. The Developmental Check-In is a new tool that could potentially be used to screen for autism that uses pictures to illustrate target behaviors. It was developed to enhance early identification of autism spectrum disorder in low literacy groups. The Developmental Check-In was tested in a sample of 376 children between the ages of 24 and 60 months, from underserved communities. It showed good ability to discriminate autism spectrum disorder from non-autism spectrum disorder (area-under-the-curve = 0.75) across the full age range represented in the sample. Twenty-six of the 28 Developmental Check-In items predicted the presence of autism spectrum disorder. Findings suggest that this pictorial tool may reduce linguistic and health literacy demands when screening for autism among vulnerable populations.
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Trastorno del Espectro Autista/diagnóstico , Disparidades en Atención de Salud , Tamizaje Masivo/métodos , Poblaciones Vulnerables , Preescolar , Femenino , Humanos , Alfabetización , Masculino , Grupos Minoritarios , PobrezaRESUMEN
Early diagnosis of autism typically is associated with earlier access to intervention and improved outcomes. Daycares and preschools largely have been ignored as possible venues for early identification. This may be especially important for minority children in the United States who are typically diagnosed with autism later than White children, limiting their access to early specialized interventions and possibly resulting in poorer outcomes. Early childcare providers within underserved communities completed autism screening tools for a sample of low-risk young children (n = 967) in their programs. Early childcare providers returned screening tools for 90% of the children for whom parental consent had been received. A total of 14% of children screened positive for autism spectrum disorder and 3% of the sample met criteria for autism spectrum disorder. Among those who screened positive, 34% were lost to follow-up. Findings suggest that early childcare providers can effectively screen young children for autism spectrum disorder in preschool/daycare settings, thus improving access to early diagnosis and reducing potential healthcare disparities among underserved populations.
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Trastorno del Espectro Autista/diagnóstico , Grupos Minoritarios , Maestros , Niño , Guarderías Infantiles , Preescolar , Diagnóstico Precoz , Intervención Educativa Precoz , Femenino , Humanos , Lactante , Masculino , Estados UnidosRESUMEN
The effect of odor on cognitive and emotional processes has been studied in adults and children, but less so in infants. In this study twenty-seven six-month-olds were presented with a video while in either an odor (pine or baby-powder) or a no odor control condition. The video was a 92-s audiovisual presentation of a woman expressing happiness and sadness, with the order of emotion counterbalanced. Infant attention (looking time) and emotional expression (smiling, crying, mouthing) were coded. Infants looked longer in the presence of odor and expressed less crying and mouthing but more smiling behavior. Presence of odor markedly reduced infant emotional distress and increased attention, suggesting that the olfactory sensory system provides cues to infants that support mood regulation and maintain attention. These results have implications for optimizing infant environments for emotional health and cognitive development.
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Atención , Llanto/psicología , Odorantes , Estrés Psicológico/prevención & control , Afecto , Señales (Psicología) , Emociones , Femenino , Felicidad , Humanos , Lactante , Aprendizaje , Masculino , Olfato/fisiología , Sonrisa , Factores de Tiempo , Grabación de Cinta de VideoRESUMEN
From birth, infants are exposed to a wealth of emotional information in their interactions. Much research has been done to investigate the development of emotion perception, and factors influencing that development. The current study investigates the role of familiarity on 3.5-month-old infants' generalization of emotional expressions. Infants were assigned to one of two habituation sequences: in one sequence, infants were visually habituated to parental expressions of happy or sad. At test, infants viewed either a continuation of the habituation sequence, their mother depicting a novel expression, an unfamiliar female depicting the habituated expression, or an unfamiliar female depicting a novel expression. In the second sequence, a new sample of infants was matched to the infants in the first sequence. These infants viewed the same habituation and test sequences, but the actors were unfamiliar to them. Only those infants who viewed their own mothers and fathers during the habituation sequence increased looking. They dishabituated looking to maternal novel expressions, the unfamiliar female's novel expression, and the unfamiliar female depicting the habituated expression, especially when sad parental expressions were followed by an expression change to happy or to a change in person. Infants are guided in their recognition of emotional expressions by the familiarity of their parents, before generalizing to others.