Trends in Unmet Need for Genetic Counseling Among Children With Special Health Care Needs, 2001-2010.

Objective: Access to genetic counseling is increasingly important to guide families' and clinicians' decision making, yet there is limited research on accessibility and affordability of counseling for families with children with special health care needs (CSHCN). Our study's objectives were to measure changes in unmet need for genetic counseling for CSHCN from 2001 to 2010 and to characterize child, family, and health system factors associated with unmet need.

Methods: We used parent-reported data from the 2001, 2005-2006, and 2009-2010 National Survey of Children With Special Health Care Needs.

Youth with special health care needs: transition to adult health care services.

Transition to adult services for children and youth with special health care needs (CYSHCN) has emerged as an important event in the life course of individuals with disabilities. Issues that interfere with efficient transition to adult health care include the perspectives of stakeholders, age limits on pediatric service, complexity of health conditions, a lack of experienced healthcare professionals in the adult arena, and health care financing for chronic and complex conditions. The purposes of this study were to develop a definition of successful transition and to identify determinants that were associated with a successful transition.

Randomized controlled trial: Multimodal Anxiety and Social Skill Intervention for adolescents with autism spectrum disorder.

Anxiety is common among adolescents with autism spectrum disorders (ASD) and may amplify the core social disability, thus necessitating combined treatment approaches. This pilot, randomized controlled trial evaluated the feasibility and preliminary outcomes of the Multimodal Anxiety and Social Skills Intervention (MASSI) program in a sample of 30 adolescents with ASD and anxiety symptoms of moderate or greater severity. The treatment was acceptable to families, subject adherence was high, and therapist fidelity was high.

ASD, a psychiatric disorder, or both? Psychiatric diagnoses in adolescents with high-functioning ASD.

Varied presentations of emotion dysregulation in autism complicate diagnostic decision making and may lead to inaccurate psychiatric diagnoses or delayed autism diagnosis for high-functioning children. This pilot study aimed to determine the concordance between prior psychiatric diagnoses and the results of an autism-specific psychiatric interview in adolescents with high-functioning autism. Participants included 35 predominantly Caucasian and male verbal 10- to 17-year-olds with a confirmed autism spectrum disorder and without intellectual disability.

Disparities in the Clinical Encounter: Virginia's African American Children with Special Health Care Needs.

This study analyzed Virginia data from the most recent National Survey of Children with Special Health Care Needs. Logistic regression models were run for six Maternal and Child Health Bureau core outcomes and included demographics, child characteristics, health care providers, and health care access variables as predictors. Race/ethnicity disparities were judged to be present if the race/ethnicity variable was a significant predictor in the final model.

Association between depression and anxiety in high-functioning children with autism spectrum disorders and maternal mood symptoms.

Research suggests that children with autism spectrum disorders (ASDs) and their relatives have high rates of depression and anxiety. However, relatively few studies have looked at both factors concurrently. This study examined the potential relationship between maternal mood symptoms and depression and anxiety in their children with ASD.

Development of a cognitive-behavioral intervention program to treat anxiety and social deficits in teens with high-functioning autism.

Anxiety is a common co-occurring problem among young people with autism spectrum disorders (ASD). Characterized by deficits in social interaction, communication problems, and stereotyped behavior and restricted interests, this group of disorders is more prevalent than previously realized. When present, anxiety may compound the social deficits of young people with ASD.

Preliminary efficacy of a cognitive-behavioral treatment program for anxious youth with autism spectrum disorders.

Anxiety is a commonly occurring psychiatric concern in adolescents with autism spectrum disorders (ASD). This pilot study examined the preliminary efficacy of a manual-based intervention targeting anxiety and social competence in four adolescents with high-functioning ASD. Anxiety and social functioning were assessed at baseline, midpoint, endpoint, and 6 months following treatment.

A de novo 1p34.2 microdeletion identifies the synaptic vesicle gene RIMS3 as a novel candidate for autism.

Background: A child with autism and mild microcephaly was found to have a de novo 3.3 Mb microdeletion on chromosome 1p34.2p34.

Anxiety in children and adolescents with autism spectrum disorders.

Anxiety and poor stress management are common concerns in clinical samples of children with autism spectrum disorders (ASD). Anxiety may worsen during adolescence, as young people face an increasingly complex social milieu and often become more aware of their differences and interpersonal difficulties. This review summarizes the state of research on the prevalence, phenomenology, and treatment of anxiety in youth with autism and related conditions such as Asperger's Disorder.

Medication use among children with autism spectrum disorders.

The study characterizes the use of psychoactive medications among children and youth with autism-spectrum disorders over the course of a calendar year. Eighty-three percent of the sample had at least one drug claim during the year. Prescribed drugs came from 125 different therapeutic classes.

Underinsurance and key health outcomes for children with special health care needs.

Objective: The objective was to examine the relationship between underinsurance and other core outcomes for children with special health care needs.

Methods: This study analyzed data from the National Survey of Children With Special Health Care Needs. Two alternative definitions of underinsurance, designated attitudinal and economic, were investigated.

Emotion perception in Asperger's syndrome and high-functioning autism: the importance of diagnostic criteria and cue intensity.

This study compared emotion perception accuracy between children with Asperger's syndrome (AS) and high-functioning autism (HFA). Thirty children were diagnosed with AS or HFA based on empirically supported diagnostic criteria and administered an emotion perception test consisting of facial expressions and tone of voice cues that varied in intensity. Participants with AS and the typically developing standardization sample of the emotion perception instrument had the same mean emotion perception accuracy, whereas participants with HFA performed significantly worse.

The discriminative ability and diagnostic utility of the ADOS-G, ADI-R, and GARS for children in a clinical setting.

Recent years have seen a surge of interest in assessment instruments for diagnosing autism in children. Instruments have generally been developed and evaluated from a research perspective. The Autism Diagnostic Observation Schedule-Generic (ADOS-G), Autism Diagnostic Interview-Revised (ADI-R), and Gilliam Autism Rating Scale (GARS) have received considerable attention and are widely used.

Defining underinsurance among children with special health care needs: a Virginia sample.

Objectives: The study sought to: 1) examine the national Children with Special Health Care Needs (CSHCN) survey to determine whether there are items that can serve to operationalize alternative definitions of underinsurance; 2) construct definitions from the survey items that are consistent with Structural and Economic definitions of underinsurance and devise an algorithm for determining underinsurance for each; and 3) compare these two underinsurance definitions with the Maternal and Child Health definition of inadequate insurance, a definition that takes an Attitudinal approach to the construct.

Methods: Analyses included Virginia children who were insured throughout the survey period. Survey items from the national CSHCN survey were examined to identify items related to underinsurance.

The neuropsychology of facial identity and facial expression in children with mental retardation.

We indirectly determined how children with mental retardation analyze facial identity and facial expression, and if these analyses of identity and expression were controlled by independent cognitive processes. In a reaction time study, 20 children with mild mental retardation were required to determine if simultaneously presented photographs of pairs of faces were pictures of the same person or of different people (identity matching), or to determine if the pairs of faces showed the same expressions or different expressions (expression matching). Faces of familiar and unfamiliar people were used as stimuli.

Behavior treatment programs, readability, and treatment outcomes.

Reading grade level and readability are rarely considered as important variables in the implementation and outcome of behavior treatment plans. In the first of two studies, we analyzed the reading level and readability of 20 behavior treatment plans developed by certified behavior analysts. We found that the behavior plans were written at college reading level-well above the reading level of the average frontline staff member.