Noelle Huntington

The Integration of Body Movement and Attention in Young Infants

The normal development of adaptive behavior in humans depends on the integration of visual attention and body movement, yet little is known about the initial state of movement-attention coupling at the beginning of postnatal life. We studied 1- and 3-month-old infants during extended periods of visual exploration and found that spontaneous shifts of gaze are preceded by rapid changes in general body movement. The results reveal a tight link between motor activation and overt attention on a time scale of seconds or less. This link undergoes substantial developmental change in the first few weeks after birth. During that time, phasic motor activation may play a key role in visual exploration by helping to unlock gaze when the environment is unchanging.

The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository

Purpose:Little is known about parental attitudes toward return of individual research results (IRRs) in pediatric genomic research. The aim of this study was to understand the views of the parents who enrolled their children in a genomic repository in which IRRs will be returned.Methods:We conducted focus groups with parents of children with developmental disorders enrolled in the Gene Partnership (GP), a genomic research repository that offers to return IRRs, to learn about their understanding of the GP, motivations for enrolling their children, and expectations regarding the return of IRRs.Results:Parents hoped to receive IRRs that would help them better understand their children’s condition(s). They understood that this outcome was unlikely, but hoped that their children’s participation in the GP would contribute to scientific knowledge. Most parents wanted to receive all IRRs about their child, even for diseases that were severe and untreatable, citing reasons of personal utility. Parents preferred electronic delivery of the results and wanted to designate their preferences regarding what information they would receive.Conclusion:It is important for researchers to understand participant expectations in enrolling in a research repository that offers to disclose children’s IRRs in order to effectively communicate the implications to parents during the consenting process.Genet Med 2012:14(3):330–337

Timing of the Diagnosis of Attention-Deficit/Hyperactivity Disorder and Autism Spectrum Disorder

BACKGROUND AND OBJECTIVE: Symptoms of inattention, hyperactivity, and impulsivity are core features of attention-deficit/hyperactivity disorder (ADHD). However, children with autism spectrum disorder (ASD) often present with similar symptoms and may receive a diagnosis of ADHD first. We investigated the relationship between the timing of ADHD diagnosis in children with ASD and the age at ASD diagnosis. METHODS: Data were drawn from the 2011–2012 National Survey of Childrens Health, which asked parents to provide the age(s) at which their child received a diagnosis of ADHD and/or ASD. Using weighted prevalence estimates, we examined the association between a previous diagnosis of ADHD and the age at ASD diagnosis, while controlling for factors known to influence the timing of ASD diagnosis. RESULTS: Our study consisted of 1496 children with a current diagnosis of ASD as reported by parents of children ages 2 to 17 years. Approximately 20% of these children had initially been diagnosed with ADHD. Children diagnosed with ADHD before ASD were diagnosed with ASD ∼3 years (95% confidence interval 2.3–3.5) after children in whom ADHD was diagnosed at the same time or after ASD. The children with ADHD diagnosed first were nearly 30 times more likely to receive their ASD diagnosis after age 6 (95% confidence interval 11.2–77.8). The delay in ASD diagnosis was consistent across childhood and independent of ASD severity. CONCLUSION: To avoid potential delays in ASD diagnosis, clinicians should consider ASD in young children presenting with ADHD symptoms.

Developmental Screening: Is There Enough Time?

Objectives . The American Academy of Pediatrics recommends routine developmental screening in well-child care. Providers cite time restraints as a limitation preventing its widespread adoption. The objectives were to determine whether routine screening lengthened well-visits and was associated with changes in parent satisfaction and report of anticipatory guidance. Methods. Visits before and after implementation of routine screening were timed. Parents whose children were seen before or after screening began were contacted to query their perceptions of the visit. Results. There was no change in visit lengths after the screener was included. With screening, more parents reported their provider talked about their concerns, and that their questions were answered. There were no changes in parent satisfaction ratings or reports of anticipatory guidance discussions. Conclusions. The perceived obstacle that routine screening requires more time than pediatricians have should not prevent its adoption. Screening tools may empower some parents otherwise reluctant to raise concerns unsolicited.

Disparity of care for children with parent-reported autism spectrum disorders.

OBJECTIVE Although children with autism spectrum disorders (ASDs) are eligible to receive special education services via an individualized education program (IEP), approximately 12% to 20% do not. Our objective was to determine which clinical and demographic characteristics are associated with IEP receipt among a nationally representative sample of children with ASD. METHODS Using data from the 2007 National Survey of Childrens Health, we determined which clinical and demographic covariates are associated with IEP receipt for children ages 6 to 17 years with a current, parent-reported ASD diagnosis (n = 759). Logistic regression models were used to assess the association of covariates with IEP receipt. Application of weighting techniques made the findings representative of the noninstitutionalized population of US children 6 to 17 years old. RESULTS In the weighted model, 90% of children with ASD receive an IEP. Maternal education level above high school (adjusted odds ratio [aOR] 4.08, P = .01) and presence of perceived need for coordination of care (aOR 3.62, P = .02) were associated with IEP receipt, while Hispanic children were less likely to receive an IEP compared with white children (aOR 0.12, P = .001). The following factors were not associated with IEP receipt: severity of ASD, speech, and behavior problems. CONCLUSIONS For children with ASD in the United States, socioeconomic factors, not disability severity, are associated with IEP receipt. Future research should address methods to overcome this disparity in care. Health care providers may help to advocate for appropriate educational services for patients with ASD.

Structure and irregularity in the spontaneous behavior of young infants

Persistent, irregular fluctuations in spontaneous motor activity are common in the young of many vertebrate species, but whether the irregularity is intrinsic to the dynamics of motor activation or the result of random perturbations is not known. Analysis of the second-by-second variation in the general body movement of awake human infants 1 and 3 months after birth revealed low dimensional structure in the characteristically irregular motor activity and exponential rates of divergence of initially similar states of motor activation. Results support the conclusion that irregularity is an intrinsic property of the dynamics of motor activation involving relatively few effective degrees of freedom and raise questions about the advantages or disadvantages of irregularity built into early behavioral organization.

Child and family characteristics associated with age of diagnosis of an autism spectrum disorder in a tertiary care setting.

Objective: To identify child and family characteristics associated with age of diagnosis of autism spectrum disorder (ASD) in a tertiary care setting using objective, standardized assessments ensuring diagnostic validity and timing. Methods: The authors conducted a chart review of children who received their initial ASD diagnosis from 2007 to 2011. Child variables included gender, birth order, cognitive functioning, and for children ⩽36 months, language and adaptive assessments. Family variables included insurance, maternal age, maternal education, sibling or family member with ASD, and number of children in the house. Primary outcome was age of ASD diagnosis. The authors ran multiple regression models evaluating the impact of child and family variables on the total sample and on the subsample of children ⩽36 months. Results: Median age of diagnosis was 2.9 years (range, 15 mo–13.8 yr; n = 591). In the total sample, significant predictors of earlier age of diagnosis were later birth order, higher maternal education, fewer children in the house, and a sibling with ASD. In a separate analysis of children ⩽36 months of age (n = 315) with additional data for language and adaptive assessments, significant predictors of younger age of diagnosis were higher cognitive and adaptive functioning, lower receptive and expressive language, and having a sibling with ASD. Conclusions: This study suggests that both family and child characteristics play an important role in the early identification of ASD and that predictive variables may vary based on a childs age. Future research should help to elucidate this finding so that screening measures and policies aimed at early identification can target the most predictive factors.

The Development of a Preference-Setting Model for the Return of Individual Genomic Research Results

Understanding participants’ preferences for the return of individual research results (IRR) in genomic research may allow for the implementation of more beneficial result disclosure methods. We tested four preference-setting models through cognitive interviews of parents to explore how parents conceptualize the process of setting preferences and which disease characteristics they believe to be most important when deciding what results to receive on their child. Severity and preventability of a condition were highly influential in decision making and certain groups of research results were anticipated by participants to have negative psychological effects. These findings informed the development of an educational tool and preference-setting model that can be scaled for use in the return of IRR from large biobank studies.

Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric Genomic Research.

The perceived benefit of return of individual research results (IRRs) in accordance to participants’ preferences in genomic biobank research is unclear. We developed an online preference-setting tool for return of IRRs based on the preventability and severity of a condition, which included an opt-out option for IRRs for mental illness, developmental disorders, childhood-onset degenerative conditions, and adult-onset conditions. Parents of patients <18 years of age at Boston Children’s Hospital were randomized to the hypothetical scenario that their child was enrolled in one of four biobanks with different policies for IRRs to receive (a) “None,” (b) “All,” (c) “Binary”—choice to receive all or none, and (d) “Granular”—use the preference-setting tool to choose categories of IRRs. Parents were given a hypothetical IRRs report for their child. The survey was sent to 11,391 parents and completed by 2,718. The Granular group was the most satisfied with the process, biobank, and hypothetical IRRs received. The None group was least satisfied and least likely to agree that the biobank was beneficial (p < .001). The response to the statement that the biobank was harmful was not different between groups. Our data suggest that the ability to designate preferences leads to greater satisfaction and may increase biobank participation.

Special education and later academic achievement.

Objectives: To determine whether grade at entry to special education is associated with improved reading achievement in children with reading disorders (RD) and whether the effect of grade at entry to special education differs by socioeconomic status (SES). Methods: The authors conducted a secondary data analysis using data from the Early Childhood Longitudinal Study—Kindergarten Cohort (ECLS-K), a nationally representative cohort of children followed longitudinally from kindergarten through eighth grade (1998–2007). Using data from the fifth grade wave of ECLS-K, the authors identified children with RD (n = 290). The outcome of interest was change in score on the reading achievement test, which was developed by ECLS-K staff, between first and fifth grade. Using multiple linear regression, the authors modeled outcome as a function of a child’s grade at entry to special education, controlling for several covariates. Results: Early entry to special education (by first grade vs second or third grade) was associated with larger gains in reading achievement between first and fifth grade (p < .0001). Children who entered special education by first grade versus second grade gained 4.5 more points on the reading achievement test (p < .0001). Children who entered special education by first grade versus third grade gained 1.7 more points on the reading achievement test (p < .0001). There was no difference in the magnitude of gains associated with early entry to special education between children from families of low and higher SES. Conclusion: For children with RD, early entry to special education is associated with improved reading achievement during elementary school.