Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care.

PURPOSE: Despite advances in screening and awareness, Black and multiracial families continue to experience challenges when seeking an autism diagnosis for their children. METHODS: We surveyed 400 Black and multiracial families of young children with autism from an existing research database in the United States about their retrospective diagnostic experiences. We gathered quantitative and qualitative data and engaged in iterative coding to understand timing and content of first concerns, families' experiences of care providers and systems, and the impact of race and culture on accessing care. RESULTS: Families provided examples of early developmental concern and described provider, systemic, and cultural barriers and facilitators to care. Families also provided insight into the influence of culture and made recommendations on how the medical system could better care for Black and multiracial families of children with autism. CONCLUSIONS: Results add to a growing body of literature supporting the need for culturally sensitive and accessible care related to developmental monitoring, diagnosis, and follow-up care for Black and multiracial children.

A Randomized Trial of the Accuracy of Novel Telehealth Instruments for the Assessment of Autism in Toddlers.

PURPOSE: Telemedicine approaches to autism (ASD) assessment have become increasingly common, yet few validated tools exist for this purpose. This study presents results from a clinical trial investigating two approaches to tele-assessment for ASD in toddlers. METHODS: 144 children (29% female) between 17 and 36 months of age (mean = 2.5 years, SD = 0.33 years) completed tele-assessment using either the TELE-ASD-PEDS (TAP) or an experimental remote administration of the Screening Tool for Autism in Toddlers (STAT). All children then completed traditional in-person assessment with a blinded clinician, using the Mullen Scales of Early Learning (MSEL), Vineland Adaptive Behavior Scales, 3rd Edition (VABS-3), and Autism Diagnostic Observation Schedule (ADOS-2). Both tele-assessment and in-person assessment included a clinical interview with caregivers. RESULTS: Results indicated diagnostic agreement for 92% of participants. Children diagnosed with ASD following in-person assessment who were missed by tele-assessment (n = 8) had lower scores on tele- and in-person ASD assessment tools. Children inaccurately identified as having ASD by tele-assessment (n = 3) were younger than other children and had higher developmental and adaptive behavior scores than children accurately diagnosed with ASD by tele-assessment. Diagnostic certainty was highest for children correctly identified as having ASD via tele-assessment. Clinicians and caregivers reported satisfaction with tele-assessment procedures. CONCLUSION: This work provides additional support for the use of tele-assessment for identification of ASD in toddlers, with both clinicians and families reporting broad acceptability. Continued development and refinement of tele-assessment procedures is recommended to optimize this approach for the needs of varying clinicians, families, and circumstances.

Black Families' Experiences of Developmental Screening: Review of Well-Child Visits to Inform Enhanced Autism Spectrum Disorder Risk Assessment.

OBJECTIVE: Black families face barriers to early diagnosis of autism spectrum disorder (ASD). Most work emphasizes systemic delays to diagnosis rather than how existing screening procedures may affect identification. Our goal was to examine pediatric care visits in which screening was most likely to occur to document behaviors of parents and providers. METHODS: We examined 18- to 36-month primary care visits in our electronic health record system (n = 99) of thirty-nine 4- and 8-year-old Black children later diagnosed with ASD. We extracted qualitative and quantitative data and engaged in consensus coding. We captured whether formal screening occurred, the content of concerns of parents and providers, and referral patterns for follow-up care or evaluation. RESULTS: Consistent with existing work, we found differences in parent and provider concerns and discrepancies in referral rates. Parents often endorsed concerns about language, sleeping or eating habits, behavior, or motor skills rather than ASD, but specific mention of ASD as a concern increased over time. Referrals for follow-up care were more likely when providers, not parents alone, expressed concerns about patient development. CONCLUSION: Pediatric providers cannot place the burden on families to raise autism concerns. Although some level of developmental risk was noted at most visits for children later diagnosed with ASD, referrals were only made when providers were also concerned, and most of these were for speech-language evaluation. Ongoing work is necessary to better understand how existing care systems interact with diverse families to inform the creation of inclusive screening practices that mitigate diagnostic delays.

Parent Perceptions of Caregiver-Mediated Telemedicine Tools for Assessing Autism Risk in Toddlers.

Telemedicine tools have potential for increasing access to diagnostic services for children with autism spectrum disorder (ASD). Past work has utilized tele-assessment procedures in which remote psychologists observe administration of interactive screening instruments by trained, on-site providers. Although promising, this approach relies on two clinicians, limiting its efficiency and scalability. The present study examined the use, acceptability, and parents' perceptions of two caregiver-mediated tools for assessing ASD risk in toddlers, in which remote clinicians guided parents to complete interactive screening activities with their children. Most parents found tele-assessment to be comfortable, and many reported liking the parent-led nature of these tools. Parents also offered constructive feedback, which was used to modify the tele-assessment process for future study.