Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data.

Using online survey data from a large sample of adults with autism spectrum disorder and legal guardians, we first report outcomes across a variety of contexts for participants with a wide range of functioning, and second, summarize these stakeholders' priorities for future research. The sample included n = 255 self-reporting adults with autism spectrum disorder aged 18-71 years (M = 38.5 years, standard deviation = 13.

A Genetic Multimutation Model of Autism Spectrum Disorder Fits Disparate Twin Concordance Data from the USA and Canada.

Whether autism spectrum disorder (ASD) is caused by genetics, environmental factors, or a combination of both is still being debated today. To help resolve this issue, a genetic multimutation model of ASD development was applied to a wide variety of age-of-onset data from the USA and Canada, and the model is shown to fit all the data. Included in this analysis is new, updated data from the Interactive Autism Network (IAN) of the Kennedy Krieger Institute in Baltimore, Maryland.

Health care transition services for youth with autism spectrum disorders.

Objective: Little is known about accessibility to health care transition (HCT) services (HCT) for youth with autism spectrum disorders (ASD). This study examined how often youth with ASD receive HCT services and how access varied by individual, family, and health system characteristics.

Method: Questionnaires were completed by 101 parents of youth with ASD (ages 12-17 years) enrolled in a national online autism registry.

Internet-based, randomized, controlled trial of omega-3 fatty acids for hyperactivity in autism.

Objective: Preliminary evidence suggests that omega-3 fatty acids may reduce hyperactivity in children with autism spectrum disorder (ASD). We sought to examine the feasibility of a novel, Internet-based clinical trial design to evaluate the efficacy of this supplement.

Method: E-mail invitations were sent to parents of children aged 5 to 8 years enrolled in the Interactive Autism Network.

A twin study of heritable and shared environmental contributions to autism.

The present study examined genetic and shared environment contributions to quantitatively-measured autism symptoms and categorically-defined autism spectrum disorders (ASD). Participants included 568 twins from the Interactive Autism Network. Autism symptoms were obtained using the Social Communication Questionnaire and Social Responsiveness Scale.

Demographic and clinical correlates of autism symptom domains and autism spectrum diagnosis.

Demographic and clinical factors may influence assessment of autism symptoms. This study evaluated these correlates and also examined whether social communication and interaction and restricted/repetitive behavior provided unique prediction of autism spectrum disorder diagnosis. We analyzed data from 7352 siblings included in the Interactive Autism Network registry.

Confirmatory factor analytic structure and measurement invariance of quantitative autistic traits measured by the social responsiveness scale-2.

Understanding the factor structure of autistic symptomatology is critical to the discovery and interpretation of causal mechanisms in autism spectrum disorder. We applied confirmatory factor analysis and assessment of measurement invariance to a large (N = 9635) accumulated collection of reports on quantitative autistic traits using the Social Responsiveness Scale, representing a broad diversity of age, severity, and reporter type. A two-factor structure (corresponding to social communication impairment and restricted, repetitive behavior) as elaborated in the updated Diagnostic and Statistical Manual of Mental Disorders (5th ed.

Risk factors for bullying among children with autism spectrum disorders.

Although children with disabilities have been found to be at an increased risk of bullying, there are limited studies investigating predictors of bullying involvement in children with autism spectrum disorders. The current study presents findings from 1221 parents of children diagnosed with autism spectrum disorder who were selected from a national web-based registry. Parents completed a survey dedicated to the school and bullying experiences of their child, and multivariate logistic regression analyses were conducted to identify child and school risk factors for involvement as victim, bully, or bully-victim.

The relationship between the medical home and unmet needs for children with autism spectrum disorders.

The purpose of this study was to examine the relationship between having access to a medical home and unmet needs for specialty care services for children with autism spectrum disorders (ASD). Parents of children enrolled in a national autism registry were invited to complete an online Access to Care Questionnaire. The resulting sample consisted of 371 parents-child dyads.

The association between bullying and the psychological functioning of children with autism spectrum disorders.

Objective: Bullying has become a major national concern, particularly as it affects children with disabilities. The current study aimed to determine the association between psychiatric comorbid conditions, involvement in bullying (victim, bully, or bully-victim), and the immediate psychological correlates of bullying among children with autism spectrum disorders (ASDs).

Methods: A national sample of 1221 parents completed a survey dedicated to the bullying and school experiences of their child with ASD, reporting on the immediate consequences of bullying involvement, including their child's psychological well-being and any psychiatric comorbidity.

The association between child autism symptomatology, maternal quality of life, and risk for depression.

Parents raising children with autism spectrum disorders (ASDs) have been shown to experience high levels of stress and report a lower quality of life. The current study examined the association between child autism symptomatology, mother's quality of life, and mother's risk for depression in a sample of 1,110 mothers recruited from a web-based registry of families with children with an ASD. Higher autism symptomatology and a greater number of co-occurring psychiatric disorders in the child were associated with an increased risk for current treatment of maternal depression and a lower maternal quality of life.

Determinants of appointment absenteeism at an outpatient pediatric autism clinic.

Objective: Two widely discussed yet highly understudied factors that obstruct timely diagnosis and intervention among children with an autism spectrum disorder (ASD) are missed scheduled appointments and wait time for outpatient services. Research surrounding outpatient appointment no-show and cancellation rates as well as predictors of such would shed light on the barriers to community-based clinical care.

Methods: In this study, data from 8049 children and adolescents (mean = 6.

Occurrence and family impact of elopement in children with autism spectrum disorders.

Objectives: Anecdotal reports suggest that elopement behavior in children with autism spectrum disorders (ASDs) increases risk of injury or death and places a major burden on families. This study assessed parent-reported elopement occurrence and associated factors among children with ASDs.

Methods: Information on elopement frequency, associated characteristics, and consequences was collected via an online questionnaire.

Mood disorders in mothers of children on the autism spectrum are associated with higher functioning autism.

Mood disorders occur more frequently in family members of individuals with autism spectrum disorders (ASD) than in the general population. There may be associations between maternal mood disorder history patterns and specific ASD phenotypes. We therefore examined the relationship between maternal mood disorders and child autism spectrum disorders in 998 mother-child dyads enrolled in a national online autism registry and database.

Survey non-response in an internet-mediated, longitudinal autism research study.

Objective: To evaluate non-response rates to follow-up online surveys using a prospective cohort of parents raising at least one child with an autism spectrum disorder. A secondary objective was to investigate predictors of non-response over time.

Materials And Methods: Data were collected from a US-based online research database, the Interactive Autism Network (IAN).

Validation of proposed DSM-5 criteria for autism spectrum disorder.

Objective: The primary aim of the present study was to evaluate the validity of proposed DSM-5 criteria for autism spectrum disorder (ASD).

Method: We analyzed symptoms from 14,744 siblings (8,911 ASD and 5,863 non-ASD) included in a national registry, the Interactive Autism Network. Youth 2 through 18 years of age were included if at least one child in the family was diagnosed with ASD.

Verification of parent-report of child autism spectrum disorder diagnosis to a web-based autism registry.

Growing interest in autism spectrum disorder (ASD) research requires increasingly large samples to uncover epidemiologic trends; such a large dataset is available in a national, web-based autism registry, the Interactive Autism Network (IAN). The objective of this study was to verify parent-report of professional ASD diagnosis to the registry's database via a medical record review on a sample of IAN Research participants. Sixty-one percent of families agreed to participate; 98% (n = 116) of whom provided documentation verifying a professionally diagnosed ASD.

Factors affecting age at initial autism spectrum disorder diagnosis in a national survey.

Entry into early intervention depends on both age of first parent concern (AOC) and age at initial autism spectrum disorder (ASD) diagnosis (AOD). Using data collected from a national online registry from 6214 children diagnosed with an ASD between 1994 and 2010 in the US, we analyzed the effect of individual, family, and geographic covariates on AOC and AOD in a multivariate linear regression model with random effects. Overall, no single modifiable factor associated with AOC or AOD emerged but cumulative variation in certain individual- and family-based features, as well as some geographic factors, all contribute to AOC and AOD variation.

Parent report of community psychiatric comorbid diagnoses in autism spectrum disorders.

We used a national online registry to examine variation in cumulative prevalence of community diagnosis of psychiatric comorbidity in 4343 children with autism spectrum disorders (ASD). Adjusted multivariate logistic regression models compared influence of individual, family, and geographic factors on cumulative prevalence of parent-reported anxiety disorder, depression, bipolar disorder, and attention deficit/hyperactivity disorder or attention deficit disorder. Adjusted odds of community-assigned lifetime psychiatric comorbidity were significantly higher with each additional year of life, with increasing autism severity, and with Asperger syndrome and pervasive developmental disorder-not otherwise specified compared with autistic disorder.

Sibling recurrence and the genetic epidemiology of autism.

Objective: Although the symptoms of autism exhibit quantitative distributions in nature, estimates of recurrence risk in families have never previously considered or incorporated quantitative characterization of the autistic phenotype among siblings.

Method: The authors report the results of quantitative characterization of 2,920 children from 1,235 families participating in a national volunteer register, with at least one child clinically affected by an autism spectrum disorder and at least one full biological sibling.

Results: A traditionally defined autism spectrum disorder in an additional child occurred in 10.

Accuracy of phenotyping of autistic children based on Internet implemented parent report.

While strong familial evidence supports a substantial genetic contribution to the etiology of autism spectrum disorders (ASD), specific genetic abnormalities have been identified in only a small minority of all cases. In order to comprehensively delineate the genetic components of autism including the identification of rare and common variants, overall sample sizes an order of magnitude larger than those currently under study are critically needed. This will require rapid and scalable subject assessment paradigms that obviate clinic-based time-intensive behavioral phenotyping, which is a rate-limiting step.

Stability of initial autism spectrum disorder diagnoses in community settings.

The study's objectives were to assess diagnostic stability of initial autism spectrum disorder (ASD) diagnoses in community settings and identify factors associated with diagnostic instability using data from a national Web-based autism registry. A Cox proportional hazards model was used to assess the relative risk of change in initial ASD diagnosis as a function of demographic characteristics, diagnostic subtype, environmental factors and natural history. Autistic disorder was the most stable initial diagnosis; pervasive developmental disorder-not otherwise specified was the least stable.

Cost-effectiveness of skin-barrier-enhancing emollients among preterm infants in Bangladesh.

Objective: To evaluate the cost-effectiveness of topical emollients, sunflower seed oil (SSO) and synthetic Aquaphor, versus no treatment, in preventing mortality among hospitalized preterm infants (< 33 weeks gestation) at a tertiary hospital in Bangladesh.

Methods: Evidence from a randomized controlled efficacy trial was evaluated using standard Monte Carlo simulation. Programme costs were obtained from a retrospective review of activities.

Onset patterns prior to 36 months in autism spectrum disorders.

The present study investigated differences among children with three different patterns of autism symptom onset: regression, plateau, and no loss and no plateau. Cross-sectional data were collected from parents of children aged 3-17 years with an autism spectrum disorder (n = 2,720) who were recruited through a US-based online research database. Parental report of developmental characteristics was assessed through a parent questionnaire, and current autism symptoms were measured via the Social Responsiveness Scale and Social Communication Questionnaire.