Who Gets What? Describing the Non-supervisory Training and Supports Received by Home Visiting Staff Members and its Relationship with Turnover.

The early childhood home visiting field lacks a basic understanding of home visiting program staff members' receipt of on-the-job training from experts outside of their programs who are not their immediate colleagues or supervisors. To address this gap, we created a unique dataset by asking program leaders to log the external technical assistance (TA) that staff members received, and we collected a survey from 288 of the same staff members. We performed descriptive analyses to learn how many hours of TA staff members were receiving, what topics the TA most commonly addressed, and what formats (e.g., in-person or virtual/remote, individual, or group) the TA was most commonly provided in. We then associated characteristics of the TA received with staff and program characteristics, as well as with staff members' turnover. Multilevel analyses showed the TA supports that home visiting staff members received differed by role (home visitor or supervisor) and program characteristics, including home visiting model-Nurse Family Partnership (NFP) or Parents as Teachers (PAT)-program size, and maturity. About 23% of the home visiting staff members left their programs over the course of 18 months. PAT staff members were more likely to leave their programs than NFP staff members. We did not find that characteristics of TA received were predictive of staff members' turnover. Implications and the need for further research are discussed.

Reading and math achievement profiles and longitudinal growth trajectories of children with an autism spectrum disorder.

This study examined the reading and math achievement profiles and longitudinal growth trajectories of a nationally representative sample of children ages 6 through 9 with an autism spectrum disorder. Four distinct achievement profiles were identified: higher-achieving (39%), hyperlexia (9%), hypercalculia (20%) and lower-achieving (32%). Children with hypercalculia and lower-achieving profiles were more likely to be from low socioeconomic families and had lower functional cognitive skills than the higher-achieving profile. All four profiles lost ground in passage comprehension over time. Slower improvement occurred for the higher-achieving group on letter-word identification, the hyperlexia group on conversation abilities and the hypercalculia group on calculation and functional cognitive skills relative to the lower-achieving group.

Modeling the impact of formal and informal supports for young children with disabilities and their families.

OBJECTIVE: The purpose of this work was to examine factors related to perceived impact of early intervention on children with disabilities and their families. METHODS: A nationally representative sample of approximately 2100 parents completed a 40-minute telephone interview near their child's third birthday. Structural equation modeling examined the relationships between 3 support variables (quality of child services, quality of family services, and family/community support) and 2 outcomes at 36 months (impact on child and impact on family) and determined whether these relationships were mediated by 2 perceptual variables (optimism and confidence in parenting) or moderated by 5 demographic variables (poverty, maternal education, ethnicity, age of initial Individual Family Service Plan, and health at 36 months). RESULTS: Perceived impact of early intervention on both child and family were significantly related to each other. The quality of child services was related to impact on the child but not on the family. The quality of family services was related to both child and family impact. Informal support was not related to perceived impact on children or families but was strongly related to confidence in parenting and optimism. Neither optimism nor confidence in parenting mediated the relationships between services or supports and perceived impact. Minority families and families of children with poor health reported lower quality of services, but these characteristics did not moderate the relationships between services and perceived impact on the child. However, both poverty status and minority status were associated with perceptions of impact on the family. CONCLUSIONS: Findings reinforce the role of high-quality services in maximizing perceived impact. They also highlight the important role of informal support in promoting optimism and confidence in parenting. Poverty status, minority status, and poor health of the child are salient factors in predicting lower perceived quality of and benefit from services.

Dimensions of behavior of toddlers entering early intervention: child and family correlates.

This study examined the nature and correlates of the behavioral characteristics of a nationally representative sample of 1612 toddlers 18-31 months of age entering Part C early intervention services in the U.S. Factor analysis of 15 items describing child behavior collected as part of an extensive telephone interview of parents yielded four dimensions of behavior: difficult behaviors, lack of persistence, distractible, and withdrawn. Demographic and personal characteristics of the child and family were found to be related to the four behavioral dimensions. Parent reports of behavior of toddlers with fair or poor health or those with communication difficulties were less positive for all behavioral dimensions, suggesting the development of toddler behavioral characteristics is influencing or being influenced by other facets of development.

Brief report: effect of maternal age on severity of autism.

The etiology of autism is complex, consisting of unknown genetic and environmental factors. Previous studies have revealed that maternal age is increased in autism compared to controls, making it a possible risk factor. This study examined the effects of maternal age on autism severity using IQ as a measure of cognitive severity and selected subtests of the Child Behavior Checklist (CBCL) as measures of social severity. A sample of 154 subjects with autism spectrum disorders was obtained from the Stanford Neuropsychiatry/Pervasive Developmental Disorder (PDD) clinic. Results indicate that there is no relationship between IQ or selected CBCL subtests and maternal age, suggesting that maternal age does not influence the severity of autism as measured by these indicators.

Thirty-six-month outcomes for families of children who have disabilities and participated in early intervention.

OBJECTIVE: Infants and toddlers with disabilities in the United States and their families are eligible for early intervention services under Part C of the Individuals With Disabilities Education Act. The purpose of this study was to assess family outcomes at the end of early intervention (near the child's third birthday). METHODS: A nationally representative sample of 2586 parents in 20 states completed a 40-minute telephone interview on or near their child's third birthday. This article summarizes data related to perceived family outcomes at the end of early intervention. RESULTS: At the end of early intervention, most parents felt competent in caring for their children, advocating for services, and gaining access to formal and informal supports. They also were generally optimistic about the future. Most (82%) parents believed that their family was better off as a result of early intervention. Parents were somewhat less positive in their perceived ability to deal with their child's behavior problems or gain access to community resources, and lower family outcome scores were found for parents of minority children, children with health problems, and children who were living with a single adult. CONCLUSION: Results suggest that Part C early intervention provides important supports for families of young children with disabilities. The findings reinforce the need for experimental research to identify factors that are most likely to lead to successful outcomes for all families. In the meantime, early identification and expeditious referral are important so that maximum benefit can be realized for children with disabilities and their families.

First experiences with early intervention: a national perspective.

BACKGROUND: Families of young children with disabilities are eligible for early intervention services as mandated by Part C of the Individuals With Disabilities Education Act. Although prior research has shown that families are generally satisfied with early intervention, this research has not been based on a nationally representative sample of families, nor has it systematically examined perceptions of the initial experiences entering early intervention. OBJECTIVE: This study was designed to determine families' initial experiences in determining their child's eligibility, interactions with medical professionals, effort required to obtain services, participation in planning for services, satisfaction with services, and interactions with professionals. METHOD: We interviewed a nationally representative sample of 3338 parents of young children with or at risk for disability. All the children had recently entered an early intervention program operated under the auspices of Part C of the Individuals With Disabilities Education Act. RESULTS: The average age at which families reported a concern about their child was 7.4 months. A diagnosis was made, on average, 1.4 months later, the child was referred for early intervention an average of 5.2 months after the diagnosis, and the individualized family service plan was developed 1.7 months later or at an average age of 15.7 months. Most families were very positive about their entry into early intervention programs. They reported discussing their concerns with a medical professional and finding that person helpful. Families reported relative ease in accessing services, felt that services were related to their perceived needs, rated positively the professionals working in early intervention, and felt that they had a role in making key decisions about child and family goals. A small percentage of families experienced significant delays in getting services, wanted more involvement in service planning, or felt that services were inadequate, and nearly 20% were unaware of the existence of a written plan for services. Minority families, families with limited income, and families with less-educated mothers were more likely to report negative experiences. CONCLUSIONS: We conclude that the beginning of early intervention services generally is highly successful and responsive, a finding that should give pediatricians more confidence in referring families for early intervention services. However, research and local evaluation efforts are needed to develop strategies to assure that all families receive services in a timely and appropriate fashion.

Lack of evidence for an association between WNT2 and RELN polymorphisms and autism.

Autism is a pervasive neurodevelopmental disorder characterized by deficits in language development and social interaction, as well as stereotypical, repetitive behaviors. The etiology of autism is largely unknown. Family and twin studies have provided compelling evidence for a strong genetic component in most idiopathic cases. Several recent candidate gene studies have suggested that alleles of WNT2 and the reelin gene (RELN), two genes involved in distinct aspects of neurodevelopment, confer greater susceptibility to autism. We screened WNT2 for DNA polymorphisms by sequencing all exons and adjacent intronic regions in 24 autistic patients, and identified not only the WNT2 variants reported previously (two common single-nucleotide polymorphisms (SNPs) in the 5' upstream region and the 3' untranslated region (UTR), respectively), but also two new SNPs in its 3' UTR. We genotyped all four WNT2 polymorphisms and a polymorphic trinucleotide repeat in the 5' UTR of RELN in 107 families with multiple autistic children, and evaluated evidence for association between these variants and autism by the transmission disequilibrium test (TDT). Our results revealed no deviation from the null hypothesis of no association. Our interpretation of these findings is that it is unlikely that DNA variations in RELN and WNT2 play a significant role in the genetic predisposition to autism.

Behavioral phenotypic variation in autism multiplex families: evidence for a continuous severity gradient.

Recent genetic investigations of autism have studied multiplex families, typically including families with multiple siblings who meet criteria for a diagnosis of autism. However, little is known about the specific behavioral characteristics of siblings with autism in these multiplex families. We investigated the behavioral phenotypic variability and similarity of 351 siblings with autism in 171 multiplex families using cluster analysis and correlations. The results of cluster analyses showed that the individuals with autism could be characterized on a severity gradient: a continuum based on severity of symptoms and impairment as measured by Autism Diagnostic Interview-Revised (ADI-R) scores, verbal-nonverbal status, and nonverbal IQ scores. Clusters based on scores from the ADI-R for the autism diagnostic criteria of the DSM-IV and nonverbal IQ scores still represented a severity gradient when the effects of verbal-nonverbal status were removed. The severity gradient was shown to be heritable, with a sib correlation of 30% or a heritability of 60%. In summary, in a sample of 171 autism multiplex families, there was no evidence of discrete behaviorally defined subgroups of affected individuals or families characterized by distinct patterns of behavioral symptoms. Rather, the clusters could be characterized along a single, heritable, continuous severity dimension.

Lack of association between HoxA1 and HoxB1 gene variants and autism in 110 multiplex families.

A recent report suggested that the HoxA1 and/or HoxB1 genes play a role in susceptibility to autism. To determine whether these findings could be confirmed, we screened these genes for DNA polymorphisms by sequencing all exons in 24 individuals with autism. We identified the same sequence variants in the genes that appeared in this report, which include one single-base substitution variant in HoxA1 and a common haplotype in HoxB1. We performed an association study by applying the transmission disequilibrium test to detect possible association of these variants to autism in 110 multiplex families. Our results demonstrated no deviation from the null hypothesis of no association. We have also separately examined transmissions within individual mating types, for paternal versus maternal alleles, to affected versus unaffected children, and for transmission to affected boys versus girls. None of these subsets revealed significant deviation from the null expectation. Our interpretation of these findings is that it is unlikely that HoxA1 and HoxB1 play a significant role in the genetic predisposition to autism.