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.

Validity of the Toddler Autism Symptom Inventory in Non-Hispanic White and Black Toddlers.

Racial disparities exist in autism diagnosis, and yet, the development of most diagnostic tools has not explicitly examined measurement equity between racial and ethnic groups. We examined the validity of the Toddler Autism Symptom Inventory (TASI), a semi-structured interview developed for diagnosis of toddlers, in non-Hispanic Black/African American and non-Hispanic White children. After controlling for group differences in socio-economic status, no differences in diagnosis, age at diagnosis, mean developmental level, or autism severity were found. TASI ROC curves for both groups, in the overall sample, and in samples stratified by SES, showed high AUC values. Validity of two cutoff scores was acceptable. Lack of significant differences in TASI score or responses to individual items suggests similar symptomatology. These results provide early support for the use of the TASI in diagnostic evaluations of Black and White children.

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.

The Toddler Autism Symptom Inventory: Use in diagnostic evaluations of toddlers.

LAY ABSTRACT: Determining whether a young child has an autism spectrum disorder requires direct observation of the child and caregiver report of the child's everyday behaviors. There are few interviews for parents that are specifically designed for children under 3 years of age. The Toddler Autism Symptom Inventory is a new interview that asks caregivers of children age 12-36 months about symptoms of possible autism spectrum disorder. The Toddler Autism Symptom Inventory uses a cutoff score to indicate likelihood for autism spectrum disorder; this cutoff score appears to accurately identify most children who are diagnosed with autism spectrum disorder without identifying too many who do not have autism spectrum disorder. The Toddler Autism Symptom Inventory interview can help clinicians to determine whether a young child shows symptoms suggestive of an autism spectrum disorder.

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.

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.

Parental Perceptions of a Comprehensive Diagnostic Evaluation for Toddlers at Risk for Autism Spectrum Disorder.

Parent satisfaction with neurodevelopmental evaluations may influence the pursuit of intervention. Parent satisfaction with a neurodevelopmental evaluation for toddlers at risk for autism (n = 257; 128 with autism) was examined using the Post-Evaluation Satisfaction Questionnaire, which collected quantitative and qualitative information. Fewer ethnic/racial minority than non-minority parents returned the questionnaire. Factor analysis indicated a one-factor model, Total score, which did not differ significantly by diagnosis, autism severity, child's cognitive or adaptive delay, family race/ethnicity, maternal education, family annual income, or parental stress. Examination of 24 individual items showed a race/ethnicity difference for only one item; minority parents scored the evaluation as meeting their needs less. Qualitative data stressed the importance of fully explaining diagnoses/recommendations and providing direct and clear feedback.

Genetic testing including targeted gene panel in a diverse clinical population of children with autism spectrum disorder: Findings and implications.

BACKGROUND: Genetic testing of children with autism spectrum disorder (ASD) is now standard in the clinical setting, with American College of Medical Genetics and Genomics (ACMGG) guidelines recommending microarray for all children, fragile X testing for boys and additional gene sequencing, including PTEN and MECP2, in appropriate patients. Increasingly, testing utilizing high throughput sequencing, including gene panels and whole exome sequencing, are offered as well. METHODS: We performed genetic testing including microarray, fragile X testing and targeted gene panel, consistently sequencing 161 genes associated with ASD risk, in a clinical population of 100 well characterized children with ASD. Frequency of rare variants identified in individual genes was compared with that reported in the Exome Aggregation Consortium (ExAC) database. RESULTS: We did not diagnose any conditions with complete penetrance for ASD; however, copy number variants believed to contribute to ASD risk were identified in 12%. Eleven children were found to have likely pathogenic variants on gene panel, yet, after careful analysis, none was considered likely causative of disease. KIRREL3 variants were identified in 6.7% of children compared to 2% in ExAC, suggesting a potential role for KIRREL3 variants in ASD risk. Children with KIRREL3 variants more often had minor facial dysmorphism and intellectual disability. We also observed an increase in rare variants in TSC2. However, analysis of variant data from the Simons Simplex Collection indicated that rare variants in TSC2 occur more commonly in specific racial/ethnic groups, which are more prevalent in our population than in the ExAC database. CONCLUSION: The yield of genetic testing including microarray, fragile X (boys) and targeted gene panel was 12%. Gene panel did not increase diagnostic yield; however, we found an increase in rare variants in KIRREL3. Our findings reinforce the need for racial/ethnic diversity in large-scale genomic databases used to identify variants that contribute to disease risk.

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.

Standardized screening facilitates timely diagnosis of autism spectrum disorders in a diverse sample of low-risk toddlers.

OBJECTIVE: Routine, standardized screening for autism spectrum disorder (ASD) has been hypothesized to reduce known racial/ethnic and socioeconomic status (SES) disparities in age of first diagnosis. This study explored demographic differences in toddlers' age and performance on developmental measures at the time of ASD assessment. METHOD: Toddlers (16-39 months at evaluation) who screened at-risk for developmental delay on the Modified Checklist for Autism in Toddlers (M-CHAT) or M-CHAT-Revised (M-CHAT-R) and follow-up interview participated in a diagnostic assessment. Of these, 44.7% were racial/ethnic minorities and 53.5% were non-minorities. Child race/ethnicity, years of maternal education (MEd), and household yearly income (YI) were parent-reported. RESULTS: Small but significant correlations were observed between MEd or YI and evaluation age and adaptive communication, socialization, and motor scores. Controlling for MEd and YI, minority racial/ethnic group did not predict child's performance on most measures and did not predict likelihood of ASD diagnosis. Differences in age at evaluation and receptive language skills were small effects. CONCLUSION: Significant but small effects emerged for SES and minority status on toddlers' age at evaluation and parent-reported adaptive skills, but these did not predict ASD diagnosis. The small magnitude of these effects suggests that routine, standardized screening for ASD in toddlers and timely access to diagnostic evaluation can reduce disparities in age at diagnosis and possibly reduce racial/ethnic disparities in access to services for ASD and other developmental delays.

Validation of the modified checklist for Autism in toddlers, revised with follow-up (M-CHAT-R/F).

OBJECTIVE: This study validates the Modified Checklist for Autism in Toddlers, Revised with Follow-up (M-CHAT-R/F), a screening tool for low-risk toddlers, and demonstrates improved utility compared with the original M-CHAT. METHODS: Toddlers (N = 16,071) were screened during 18- and 24-month well-child care visits in metropolitan Atlanta and Connecticut. Parents of toddlers at risk on M-CHAT-R completed follow-up; those who continued to show risk were evaluated. RESULTS: The reliability and validity of the M-CHAT-R/F were demonstrated, and optimal scoring was determined by using receiver operating characteristic curves. Children whose total score was ≥ 3 initially and ≥ 2 after follow-up had a 47.5% risk of being diagnosed with autism spectrum disorder (ASD; confidence interval [95% CI]: 0.41-0.54) and a 94.6% risk of any developmental delay or concern (95% CI: 0.92-0.98). Total score was more effective than alternative scores. An algorithm based on 3 risk levels is recommended to maximize clinical utility and to reduce age of diagnosis and onset of early intervention. The M-CHAT-R detects ASD at a higher rate compared with the M-CHAT while also reducing the number of children needing the follow-up. Children in the current study were diagnosed 2 years younger than the national median age of diagnosis. CONCLUSIONS: The M-CHAT-R/F detects many cases of ASD in toddlers; physicians using the 2-stage screener can be confident that most screen-positive cases warrant evaluation and referral for early intervention. Widespread implementation of universal screening can lower the age of ASD diagnosis by 2 years compared with recent surveillance findings, increasing time available for early intervention.

Reported experiences with prenatal care: is there a difference in patient satisfaction based on racial and ethnic background?

Pregnant women were queried to determine if racial and ethnic disparities exist in prenatal care by assessing their satisfaction in private and clinic practices. An anonymous survey was distributed in both English and Spanish and focused on demographics, satisfaction and cultural sensitivity. A total of 273 surveys were collected. Demographics of clinic patients (Hispanic 62%, Black 26.4%, and Caucasian 5%) varied significantly (P < 0.001) from private patients (Caucasian 62.5%, Black 14.1%, and Hispanic 18.8%). Significant differences were noted between clinic and private patients' in their country of birth, education, income, insurance, employment status, home ownership, and planned pregnancies. Patients reported that their prenatal care was influenced by race (27% clinic vs 5% private, P < 0.001) and language (24.9% clinic vs 4.9% private, P = 0.004). Race andlanguagewere morelikelyto influence clinic patients' perceptions of the prenatal care received as compared to those seeking care in private practices.

Screening young children for autism spectrum disorders in primary practice.

The increasing prevalence of autism spectrum disorders as well as emerging evidence of the efficacy of early intervention has focused attention on the need for early identification of young children suspected of having an ASSD. Several studies have suggested that while parents report concerns early in development, it may be months before children can be evaluated and services provided, and these delays may be even more marked in under-served populations. The American Academy of Pediatrics recently recommended universal screening for autism spectrum disorders at the 18- and 24-month well-child pediatric visit. The authors review several early screening tools currently in use and offer recommendations for integrating autism specific screening into primary care practice.

Accelerated head and body growth in infants later diagnosed with autism spectrum disorders: a comparative study of optimal outcome children.

Previous research has demonstrated accelerated head and body growth during infancy in children with autism spectrum disorders. No study has yet examined head growth in children who lose their autism spectrum disorder diagnoses. Head circumference, length, and weight growth during infancy for 24 children who maintained their diagnoses were compared with 15 children who lost their diagnoses, and to 37 typically developing controls. Results showed that head circumference and weight growth were significantly greater in both autism spectrum disorder groups compared with controls, with no significant differences between autism spectrum disorder groups. However, when length and weight were controlled for, accelerated head growth remained significant in the children who lost their diagnoses. Findings suggest that children who lose their autism spectrum disorder diagnoses and children who maintain their diagnoses show similar head circumference, length, and weight growth trajectories during infancy, although subtle differences in body growth between groups may exist.

The modified checklist for autism in toddlers: a follow-up study investigating the early detection of autism spectrum disorders.

Autism spectrum disorders (ASD) often go undetected in toddlers. The Modified Checklist for Autism in Toddlers (M-CHAT) was used to screen 3,793 children aged 16-30 months from low- and high-risk sources; screen positive cases were diagnostically evaluated. Rescreening was performed on 1,416 children aged 42-54 months. Time 1 Positive Predictive Value (PPV) was .36 for the initial screening and .74 for the screening plus follow-up telephone interview; values were similar for Time2 PPV. When separating referral sources, PPV was low for the low-risk sample but acceptable with the followup telephone interview. Children with ASD from the low-risk and high-risk samples were highly similar. Results indicate that the M-CHAT continues to be a promising instrument for the early detection of ASD.

Diagnostic stability in very young children with autism spectrum disorders.

Autism Spectrum Disorders (ASD) diagnosis in very young children may be delayed due to doubts about validity. In this study, 77 children received a diagnostic and developmental evaluation between 16 and 35 months and also between 42 and 82 months. Diagnoses based on clinical judgment, Childhood Autism Rating Scale, and the Autism Diagnostic Observation Schedule were stable over time. Diagnoses made using the Autism Diagnostic Interview were slightly less stable. According to clinical judgment, 15 children (19%) moved off the autism spectrum by the second evaluation; none moved onto the spectrum. Results indicate diagnostic stability at acceptable levels for diagnoses made at age 2. Movement off the spectrum may reflect true improvement based on maturation, intervention, or over-diagnosis at age 2.