Applying a User-Centered Design Framework to Develop a Remote Research Assessment Protocol for a Randomized Clinical Trial for Toddlers with Early Autism Characteristics.

COVID-19 required many research teams to shift from in-person to remote assessments, which posed both procedural and theoretical challenges. While research has explored the utility of remote assessments for autism diagnosis from the perspective of families and clinicians, less is known about their application in clinical trials. This paper describes the development of a remote research assessment protocol for a randomized clinical trial focusing on the implementation of reciprocal imitation teaching (RIT) with toddlers in Part C early intervention. This project spans two phases. For Phase 1, our team developed and documented a series of steps utilizing user-centered design (UCD) strategies (e.g., recruiting potential users, creating a prototype, engaging in iterative development) for the purpose of redesigning an assessment protocol for a remote environment. For Phase 2, we examined preliminary outcomes of the redesign process. Primary end users (assessors) rated post-redesign usability and acceptability, while acceptability was examined using attrition data from secondary end users (family participants). Preliminary fidelity of implementation was also examined. The iterative redesign process allowed the research team to refine aspects of the assessment that ultimately led to promising preliminary ratings of usability, acceptability, and feasibility, as well as high fidelity. Preliminary data suggest that the redesigned assessment appears to be an acceptable, feasible, and usable tool for autism clinical trial research and that assessors can use it with fidelity. Further research is needed to examine the reliability and validity of the assessment, as well as implementation characteristics on a larger scale.

Characterizing Accommodations by Parents of Young Children with Autism: A Mixed Methods Analysis.

Symptoms of autism influence families' participation in daily activities, but few studies have broadly explored the types of accommodations caregivers make to their family's routines after their child is diagnosed with autism. The current study used a mixed-methods approach to characterize the rate and types of accommodations made by 171 families and the child and family characteristics that predicted accommodations. Most families (91%) endorsed making accommodations in the past year. Lower income, older child age, marginalized racial/ethnic identity, and higher levels of child problem behavior predicted accommodations in a greater number of domains. Thematic analysis illuminated the types of accommodations caregivers made and their motivation for making these lifestyle adjustments. Findings have important implications for parent-mediated interventions and policy.

An initial trial of OPT-In-Early: An online training program for caregivers of autistic children.

LAY ABSTRACT: Early intervention can help children learn language and improve social communication. However, many barriers, including the expense of services and an insufficient number of providers, prohibit families from accessing services when their children are young. We developed a comprehensive online program for caregivers of autistic children. The program, Online Parent Training in Early Behavioral Intervention (OPT-In-Early), uses text and video demonstrations to teach caregivers effective methods for improving their children's language, social, and adaptive skills (e.g. using utensils, toilet training), and reducing their children's disruptive behavior. Sixty-three parents from three states participated in the study. Half of the parents received access to the OPT-In-Early program. After 4 months, parents who had access to the OPT-In-Early program learned more effective intervention strategies, and started using these strategies during interactions with their children, than parents who did not receive access to the program. Parent participation in OPT-In-Early did not significantly influence children's social communication compared to children whose parents did not have access to OPT-In-Early. A longer duration of parents using learned intervention skills with their children may be needed for children's social communication skills to improve.

Primary Care Clinician and Child Characteristics Impacting Autism Surveillance.

Early detection of autism provides access to early intervention and subsequently fewer lifelong challenges. However, disparities in screening have been associated with socioeconomic status (SES) and race, and disparities in surveillance have been associated with clinician knowledge and beliefs about autism identification. The present study examines associations between demographic variables and clinician beliefs, and agreement between screening results and clinician surveillance. Surveillance included activities used by the primary care clinicians (PCCs) to assess risk for autism. PCCs reported their beliefs about autism screening and identification, their sex, race, years in practice, and racial distribution of their patient population. Children's demographic information was also collected. PCCs identified children as having, or not having, an increased likelihood of autism, and parents of children completed an autism screener. Agreement between screening and surveillance results were examined across PCC, practice, and child demographics. Higher confidence in autism knowledge and screening resources, female PCC sex, and majority White practice patient demographics all predicted agreement between screening and surveillance. Female child sex and higher maternal education also predicted agreement between screening and surveillance. These findings highlight the importance of PCC screening beliefs and child and PCC demographics on the autism identification process.

Development and Acceptability of a New Program for Caregivers of Children with Autism Spectrum Disorder: Online Parent Training in Early Behavioral Intervention.

Early intervention with parent participation is important for facilitating skill development in children with Autism Spectrum Disorder (ASD). However, many barriers delay or prohibit families from accessing care. We describe the development and acceptability of a novel, comprehensive, self-directed online program for caregivers of children with ASD. Program effectiveness will be presented in a subsequent manuscript. The program is based on behavioral, naturalistic, and developmental principles, and teaches caregivers to use evidence-based interventions to teach developmentally appropriate targets. Approximately two-thirds of enrolled parents completed all 14 modules; barriers to completion for the additional families are described. Parents reported that the program was clear, enjoyable, and useful in teaching them interventions and in improving their children's skills and behavior.

Comparison of the Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F) Positive Predictive Value by Race.

The Modified Checklist for Autism in Toddlers, Revised, with Follow-Up (M-CHAT-R/F) is the most widely used screener for ASD. Despite the comparable rate of ASD in Black and White children, the M-CHAT-R/F was validated on a primarily White, Non-Hispanic sample. Few studies have assessed whether the screener performs adequately with racial minorities. This study compared the M-CHAT-R/F Positive Predictive Value (PPV), for ASD, and for any developmental condition, in Black and White children. We also examined M-CHAT-R/F item-level PPV by race. The PPVs for ASD and other developmental disorders were similar in both racial groups for total score and individual items. Therefore, our findings support the use of the M-CHAT-R/F with Black and White children.

Characteristics of toddlers with early versus later diagnosis of autism spectrum disorder.

LAY ABSTRACT: The emergence of autism symptoms in childhood is variable, with some children showing signs of autism spectrum disorder very early, and others not being identified until much later. Although most children in the United States are not diagnosed with autism spectrum disorder until preschool, at ages 3-4 years, symptoms can be reliably detected at 14 months. It is less certain how those toddlers diagnosed with autism spectrum disorder earlier versus later differ from each other clinically. This study revealed that young children diagnosed later in development, between ages 25 and 41 months, are more impaired on measures of cognitive, adaptive, and social functioning than their counterparts who are diagnosed with autism spectrum disorder earlier. All young children with autism spectrum disorder are impaired in communication to a similar degree, however. Universal autism screening at 18 months may identify toddlers with autism spectrum disorder when their symptoms are milder and more readily amenable to intervention. Repeated screening at 24 months is supported to detect those children missed by an earlier screening, who may be more severely affected. Caregivers should be encouraged to pursue diagnostic evaluation at an initial positive screening result to ensure timely diagnosis and treatment.

Incremental Utility of 24-Month Autism Spectrum Disorder Screening After Negative 18-Month Screening.

The American Academy of Pediatrics recommends Autism Spectrum Disorder (ASD) screening at 18 and 24 months. However, utility of rescreening at 24 months, after a negative 18-month screening, remains unknown. We identified cases of ASD detected at 24 months after a negative 18-month screening (i.e., Catch-24 group; n = 10) and compared them to toddlers detected by 18-month screening (i.e., Early Diagnosis group; n = 203). Repeated ASD-specific screening at 24 months detected children who were missed at their 18-month screening. Thus, our findings support repeated screening for ASD at both 18 and 24 months in order to maximize identification of toddlers with ASD and other neurodevelopmental disorders who require intervention.

Language Abilities in Monolingual- and Bilingual- Exposed Children with Autism or Other Developmental Disorders.

BACKGROUND: Parents and providers are sometimes concerned that exposure to two languages will impair language acquisition in children with autism spectrum disorder (ASD) or other developmental disorders (DD). However, research to date suggests that language milestones and abilities are unaffected by this exposure. The current study explored language abilities in toddlers with ASD or DD exposed to one versus multiple languages, prior to intervention. To our knowledge, this is the largest investigation of language learning in bilingual-exposed (BE) children with ASD. METHODS: Participants were 388 children evaluated as part of a larger study on the early detection of ASD. Parents were asked to list all languages that primary caretakers use to communicate with their child. One hundred six BE children (57 ASD, 49 DD) were compared to 282 monolingual-exposed (ME) children (176 ASD, 106 DD). The Mullen Scales of Early Learning assessed nonverbal and verbal abilities. Multiple regression was used to evaluate the relationship of BE to language abilities, beyond the influence of nonverbal cognitive abilities, diagnosis, and socioeconomic status. RESULTS: Results showed greater language impairment in ASD than DD, but no main effect for language exposure group nor any interaction of language group by diagnosis. Results remained consistent after controlling for socioeconomic status. CONCLUSION: This study suggests that bilingual caregivers can communicate with their children in both languages without adverse effects on their children's language functioning.

A Video Parent-Training Program for Families of Children with Autism Spectrum Disorder in Albania.

BACKGROUND: Behavioral intervention with parent participation is effective in reducing symptoms of Autism Spectrum Disorder (ASD), but access to intervention is limited. The current study explored whether a video-enriched parent-training program would (a) be comprehensible and acceptable to parents in the Republic of Albania, (b) increase parental knowledge of behavioral strategies and (c) increase parental self-efficacy. METHODS: Twenty-nine parents of children with ASD aged 18-70 months completed the Early Intervention Parenting Self-Efficacy Scale (EIPSES, Guimond, Wilcox, & Lamorey, 2008) and a quiz to assess their knowledge of behavioral strategies. Parents in the Treatment Group then received access to a parent-training (PT) program on evidence-based teaching and behavior management techniques. The program was based on empirical research, but considered Albanian cultural norms and included topics Albanian parents requested. Parents in the Treatment Group rated the program using the Treatment Evaluation Inventory Short Form (TEI-SF; Kelley, Heffer, Gresham, & Elliott, 1989). Change in parents' quiz scores and EIPSES ratings from baseline to post-treatment were compared by group. RESULTS: Parents rated this video training program as comprehensible and valuable. The program modestly increased aspects of self-efficacy as well as parents' knowledge of effective teaching strategies. CONCLUSION: Remote PT may be useful in low-resource settings to help parents develop techniques for teaching skills and forestalling problem behavior in children with ASD. Additional research, with a larger sample size, that observes the effect of the program on child behavior is warranted.

Comparison of Parent Report and Direct Assessment of Child Skills in Toddlers.

BACKGROUND: There are unique challenges associated with measuring development in early childhood. Two primary sources of information are used: parent report and direct assessment. Each approach has strengths and weaknesses, particularly when used to identify and diagnose developmental delays. The present study aimed to evaluate consistency between parent report and direct assessment of child skills in toddlers with and without Autism Spectrum Disorder (ASD) across receptive language, expressive language, and fine motor domains. METHOD: 109 children were evaluated at an average age of two years; data on child skills were collected via parent report and direct assessment. Children were classified into three groups (i.e., ASD, Other Developmental Disorder, or Typical Development) based on DSM-IV-TR diagnosis. Mixed design ANOVAs, with data source as a within subjects factor and diagnostic group as a between subjects factor, were used to assess agreement. Chi square tests of agreement were then used to examine correspondence at the item level. RESULTS: Results suggested that parent report of language and fine motor skills did not significantly differ from direct assessment, and this finding held across diagnostic groups. Item level analyses revealed that, in most cases of significant disagreement, parents reported a skill as present, but it was not seen on direct testing. CONCLUSIONS: Results indicate that parents are generally reliable reporters of child language and fine motor abilities in toddlerhood, even when their children have developmental disorders such as ASD. However, the fullest picture may be obtained by using both parent report and direct assessment.

Attention Bias to Emotional Faces Varies by IQ and Anxiety in Williams Syndrome.

Individuals with Williams syndrome (WS) often experience significant anxiety. A promising approach to anxiety intervention has emerged from cognitive studies of attention bias to threat. To investigate the utility of this intervention in WS, this study examined attention bias to happy and angry faces in individuals with WS (N = 46). Results showed a significant difference in attention bias patterns as a function of IQ and anxiety. Individuals with higher IQ or higher anxiety showed a significant bias toward angry, but not happy faces, whereas individuals with lower IQ or lower anxiety showed the opposite pattern. These results suggest that attention bias interventions to modify a threat bias may be most effectively targeted to anxious individuals with WS with relatively high IQ.