Donna Spiker

A Genomic Screen of Autism: Evidence for a Multilocus Etiology

We have conducted a genome screen of autism, by linkage analysis in an initial set of 90 multiplex sibships, with parents, containing 97 independent affected sib pairs (ASPs), with follow-up in 49 additional multiplex sibships, containing 50 ASPs. In total, 519 markers were genotyped, including 362 for the initial screen, and an additional 157 were genotyped in the follow-up. As a control, we also included in the analysis unaffected sibs, which provided 51 discordant sib pairs (DSPs) for the initial screen and 29 for the follow-up. In the initial phase of the work, we observed increased identity by descent (IBD) in the ASPs (sharing of 51.6%) compared with the DSPs (sharing of 50.8%). The excess sharing in the ASPs could not be attributed to the effect of a small number of loci but, rather, was due to the modest increase in the entire distribution of IBD. These results are most compatible with a model specifying a large number of loci (perhaps >/=15) and are less compatible with models specifying </=10 loci. The largest LOD score obtained in the initial scan was for a marker on chromosome 1p; this region also showed positive sharing in the replication family set, giving a maximum multipoint LOD score of 2.15 for both sets combined. Thus, there may exist a gene of moderate effect in this region. We had only modestly positive or negative linkage evidence in candidate regions identified in other studies. Our results suggest that positional cloning of susceptibility loci by linkage analysis may be a formidable task and that other approaches may be necessary.

Family Outcomes in Early Intervention: A Framework for Program Evaluation and Efficacy Research

Much of the focus on the relationship between parents and professionals in early intervention has been on the rationale for working with families and the processes by which that rationale should be implemented. Although some discussion has occurred regarding desired outcomes, approaches and strategies by which the attainment of family outcomes could be documented have not been widely discussed or agreed upon by the field. In this article we suggest eight questions that could serve as a framework for determining the extent to which early intervention has accomplished the goals inherent in a family-centered approach. Conceptual issues and methodological considerations associated with documenting these outcomes are presented, and recommendations regarding implementation and future directions are made.

The Relationship of Parent-Child Interaction to the Effectiveness of Early Intervention Services for at-Risk Children and Children with Disabilities

The results from four early intervention evaluation studies are described in relationship to their impact on parent-child interaction as measured by the Maternal Behavior Rating Scale. Intervention studies included the Infant Health and Development Program, the Longitudinal Studies of the Effects and Costs of Alternative Types of Early Intervention, the Play and Learning Strategies Program, and the Family-Centered Outcome study. Results from these analyses indicated that intervention effects on child development were unlikely to occur unless mothers modified their style of interacting with their children. Although these studies indicated that mothers of children who participated in intervention modified several different parameters of interactional style, only their level of responsiveness was positively associated with their childrens developmental outcomes. These results are discussed in relationship to child-focused and relationship-focused models of early intervention.

Visual Self-Recognition in Autistic Children: Developmental Relationships.

Employing a mirror procedure, 52 autistic children (CA = 3-7 to 12-8, means = 7-7) were tested for visual self-recognition. Substantial behavioral and psychometric data were collected from school records, teacher interviews, and classroom observations. Of the 52 children, 36 (69%) showed evidence of mirror self-recognition, while 16 (31%) failed to give clear indications of recognizing their mirror images. The 2 groups did not differ on CA. Severity of language impairment appeared to be a major factor differentiating the 2 groups: those who failed to show evidence of visual self-recognition were more likely than those who did show evidence of visual recognition to be mute or lacking in communicative speech (p less than .001). Other indices of impairment indicated that the children who showed the capacity for visual self-recognition had higher levels of functioning. The results are discussed in terms of an organizational perspective. This perspective argues that the study of atypical populations may elucidate the process of development by describing the coordination or sequential organization of different behavioral systems.

Recommended Outcomes for Families of Young Children with Disabilities.

The Early Childhood Outcomes (ECO) Center was funded by the Office of Special Education Programs to promote the development and implementation of child and family outcome measures for infants, toddlers, and preschoolers with disabilities. An evidence-based process with extensive stakeholder input led to the identification of five outcomes by which the effectiveness of services for families could be assessed: (a) families understand their childs strengths, abilities, and special needs; (b) families know their rights and advocate effectively for their child; (c) families help their child develop and learn; (d) families have support systems; and (e) families are able to gain access to desired services and activities in their community. These outcomes provide a framework by which states and the federal government could document whether early intervention and preschool programs are providing demonstrable benefits for families, and provide the basis for developing measurement systems to determine the extent to which such benefits have been attained.

Parent-Child interactions when young children have disabilities

Publisher Summary This chapter discusses parent–child interactions for young children with disabilities. A major focus of the research on parent–child interactions has been to document what characteristics of parental interactive behavior promote and enhance child developmental outcomes, both short term and long term. The primary focus in this chapter is on the studies with children with disabilities or those at risk for developmental delay. Some of the literature based on the samples of children, who are typically developing, is also included in the discussion to highlight the major themes and issues and to provide comparison groups. The chapter describes selected studies with five populations of children, those with: (a) Down syndrome or mental retardation, (b) developmental delay, (c) orthopedic or motor impairments or cerebral palsy, (d) autism, and (e) low birth weight. Also, the focus is on the studies of behavioral interactions but not on parenting beliefs or attitudes. The chapter concludes with a brief discussion of intervention studies with young children with disabilities or delays aimed at promoting positive parent–child interactions.

Prediction of the development of low birth weight preterm infants by a new neonatal medical index

A new neonatal medical index (NMI) was used to predict the mental and motor development of low birth weight, preterm infants up to 3-years-old. The NMI is a summary score of only a few clinically salient items that are readily available on brief chart review. The sample consisted of 512 of 608 infants randomly assigned to the control group of the eight-site Infant Health and Development Program and on whom the complete set of developmental outcome measures was available. The developmental tests administered were the Bayley Scales at 12 and 24 months and the Stanford-Binet at 3 years. The findings indicated the NMI was predictive of later cognitive and motor development, and in infants born weighing less than 1500 g, the effects of neonatal medical complications continued to adversely influence these childrens development to at least 3 years of age. In the heavier babies the developmental effects of sociodemographic factors predominated by 24 months and beyond.

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.

The Effectiveness of the Parents as Teachers Program with Low-Income Parents and Children.

The association between poverty and compromised development, particularly in the early years, has been well documented. Many early childhood programs have been designed to promote positive parenting and more enriched home environments in order to nhance childrens development. We describe findings from a multisite, randomized evaluation of the Parents as Teachers (PAT) program with 665 families, which was designed specifically to investigate the programs effectiveness with low-income families. The observed effects of the PAT program on parenting and child development outcomes were generally small, with few statistically significant effects. More consistent positive effects were noted for very low-income parents and their children relative to more moderate income parents. The discussion focuses on the policy implications of the findings for the design and implementation of early childhood parenting programs for low-income families and future research.

A National Look at Children and Families Entering Early Intervention

The National Early Intervention Longitudinal Study (NEILS) is the first study of Part C of the Individuals With Disabilities Education Act (IDEA) early intervention system with a nationally representative sample of infants and toddlers with disabilities. This article presents national estimates of characteristics of infants and toddlers and their families at the time they entered the early intervention (EI) system. The variability in children in EI is marked by high proportions of children from low-income families, ethnic minorities, those in foster care, and males. Nearly one third (32%) are low birth weight, four times the rate in the general population. Infants and toddlers in EI are eight times more likely to be rated as having fair or poor general health. Children enter at all ages across the first 3 years of life, but those eligible because of developmental delays enter as toddlers, in comparison with those eligible because of diagnosed conditions or subject to biological or environmental risk factors, who tend to enter in the first year of life. The variability of the infants and toddlers in EI indicates that there is no typical child in EI.