Interactive Autism Network Research Articles

Pursuing genetic testing for children with autism spectrum disorders: What do parents think?

The American Academy of Pediatrics, the American College of Medical Genetics and Genomics, and the American Academy of Neurology recommend genetic testing, as a genetic evaluation tool, for children diagnosed with autism spectrum disorders (ASD). Despite the potential benefits, the utilization of genetic testing is low. We proposed an integrated theoretical framework to examine parents' intention and associated psychosocial factors in pursuing genetic testing for their children with ASD. Recruiting primarily from the Interactive Autism Network, a nationwide sample of 411 parents of children with ASD who had never pursued genetic testing for their children completed our theory-based online survey. Data were analyzed using structural equation modeling. About half of the parents were willing to pursue genetic testing for their children with ASD. Findings of the structural equation modeling suggested a good model fit between our integrated theoretical framework and survey data. Parents' intention was significantly and positively associated with their attitudes toward genetic testing, subjective norm, and self-efficacy in having their children tested. This study serves as an initial window to understand parental intention to pursue genetic testing for their children with ASD. Our findings can help physicians and genetic counselors understand, educate, counsel, and support parents' decision-making about having their children with ASD genetically tested. Furthermore, our study can also assist physicians and genetic counselors in developing theory- and evidence-based patient education materials to enhance genetic testing knowledge among parents of children with ASD.

Brief Report: ASD-Related Behavior Problems and Negative Peer Experiences Among Adolescents with ASD in General Education Settings.

The goal of the current study was to test associations between various ASD-related behavior problems and negative peer experiences in adolescents with ASD. Data were obtained from the Bullying and School Experiences of Children with ASD Survey completed by parents in the Interactive Autism Network (IAN). The current study focused on data from 279 parents of 7th-11th graders with ASD who spent at least half of the school day in a general education setting. Logistic regression analyses found that frequent meltdowns, poor hygiene, rigid rule-keeping, and self-injury were associated with negative peer experiences. Surprisingly, repetitive behaviors and verbal tics were associated with a lower likelihood of experiencing verbal victimization.

Investigating mental health crisis in youth with autism spectrum disorder.

Evidence suggests that youth with autism spectrum disorder (ASD) are at increased risk for experiencing a mental health crisis. Yet, limited systematic research exists on this topic. This study examines the prevalence, phenomenology, and correlates of mental health crisis in children, adolescents, and young adults with ASD. Participants included 462 parents of individuals with ASD (83% male, 86% Caucasian, M = 13.7 years, SD = 4.7) who were enrolled in the Interactive Autism Network, a large online registry of families of individuals with ASD. Parents completed the Mental Health Crisis Assessment Scale, a psychometrically sound measure of mental health crisis for youth with ASD, as well as measures of parental depression, family quality of life, and mental health treatment history. Overall, 32% of parents reported that their child had experienced a mental health crisis during the last 3 months. In the younger group, elopement (88%) and self-injury (81%) were the most frequent behaviors contributing to crisis; physical (60%) and verbal (42%) aggression were the most frequent crisis behaviors in the older group. Correlates of crisis included younger age, increased parental depressive symptoms, and lower family quality of life. Approximately 75% of individuals in crisis had seen a psychiatrist or behavioral therapist/psychologist within the last 3 months and 25% were not engaged in any mental health treatment. In summary, mental health crises were quite prevalent in this online sample of youth with ASD. Identification and treatment of these serious events is critical to reduce morbidity in this population. Autism Res 2020, 13: 112-121. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examines the prevalence and characteristics of mental health crisis in children, adolescents, and young adults with autism spectrum disorder. We found that 32% of individuals in our study had experienced a mental health crisis within the last 3 months. Younger age, increased parental depression, and lower quality of life were associated with crisis. These findings emphasize the importance of developing child and family-based interventions to prevent and treat the mental health crisis in this population.

Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states.

Understanding parents' educational needs concerning genetic testing for their children with autism spectrum disorder (ASD) is important in developing tailored, evidence-based health education materials for clinical use. Since research is lacking in this area, to bridge the gap, we examined genetic testing education needs using a nationwide sample of parents of biological children with ASD in the United States. Prospective participants were recruited from the interactive autism network, and 552 parents of biological children with ASD completed the online survey. Most participants (73.7%) were interested in receiving health education about genetic testing. Yet, the majority of them (64.7%) reported that they did not receive the information needed from physicians. Parents who identified as racial/ethnic minorities (P = 0.029), who had an education degree below college (P = 0.002), or displayed low/no awareness of genetic testing (P = 0.003) were more interested in receiving health education regarding genetic testing. Parents' most desired topics for health education include the accuracy of genetic testing (88.4%), cost (85.9%), relevant benefits of such testing (83.8%), testing procedure (77.8%), eligibility to undergo genetic testing for their children with ASD (62.4%), potential harms caused by genetic testing (56.1%), previous use and experience among individuals affected by ASD (50.8%), and confidentiality issues (48.0%). Furthermore, web-based education was the preferable approach (85.4%). Our findings can help develop health education programs and/or materials regarding genetic testing for parents and physicians to facilitate better physician-parent communication and assist parents in making informed medical decisions regarding genetic testing. Autism Res 2019, 12: 1162-1170. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examined educational needs on genetic testing among 552 American parents of children with autism spectrum disorder (ASD). Results showed that most parents expressed interests in receiving health education regarding genetic testing (73.7%) and favored online education resources (85.4%). Preferred topics included accuracy, cost, and testing benefits. Our findings can help develop genetic testing related health education programs and materials for parents of children with ASD.

Elopement Patterns and Caregiver Strategies.

The Interactive Autism Network (IAN) administered a survey to caregivers of children with Autism Spectrum Disorder (ASD) on their interventions for elopement behavior (EB). Data from 526 respondents were analyzed. Most families reported multiple interventions for EB and rated interventions overall as effective but burdensome. Several interventions such as fencing and window locks had favorable effectiveness/burden profiles. Tracking devices were used infrequently and rated as having low effectiveness. Behavioral specialists were commonly used, rated as effective, and most often provided by insurance. Medications were rated as having low effectiveness for EB, whether taken off-label for EB or for other reasons. Further study is needed to identify EB interventions that are effective, affordable, and easy to implement are needed.

Anxiety and Mood Disorder in Children With Autism Spectrum Disorder and ADHD.

Autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) frequently co-occur. Understanding the endophenotype of children with both ASD and ADHD may impact clinical management. In this study, we compare the comorbidity of anxiety and mood disorders in children with ASD, with and without ADHD. We performed a cross-sectional study of children with ASD who were enrolled in the Interactive Autism Network, an Internet-mediated, parent-report, autism research registry. Children ages 6 to 17 years with a parent-reported, professional, and questionnaire-verified diagnosis of ASD were included. Data were extracted regarding parent-reported diagnosis and/or treatment of ADHD, anxiety disorder, and mood disorder. ASD severity was measured by using Social Responsiveness Scale total raw scores. There were 3319 children who met inclusion criteria. Of these, 1503 (45.3%) had ADHD. Comorbid ADHD increased with age (P < .001) and was associated with increased ASD severity (P < .001). A generalized linear model revealed that children with ASD and ADHD had an increased risk of anxiety disorder (adjusted relative risk 2.20; 95% confidence interval 1.97-2.46) and mood disorder (adjusted relative risk 2.72; 95% confidence interval 2.28-3.24) compared with children with ASD alone. Increasing age was the most significant contributor to the presence of anxiety disorder and mood disorder. Co-occurrence of ADHD is common in children with ASD. Children with both ASD and ADHD have an increased risk of anxiety and mood disorders. Physicians who care for children with ASD should be aware of the coexistence of these treatable conditions.

Large Databases for Pediatric Research on Children with Autism Spectrum Disorder.

This article reviews the data available in 3 large databases for use in conducting studies of children with autism spectrum disorder (ASD). The article describes the data structure, data elements, and strengths and weaknesses of the 3 data sets. Each of the 3 data sets, the Interactive Autism Network (IAN), the Autism Treatment Network (ATN), and PEDSnet have large cohorts of children with ASD. IAN has strengths in patient-reported measures, ATN in clinical characterization, and PEDSnet in health care encounters and electronic medical record data. The data sets described here have potential for further studies that could help improve the care and well-being of children with ASD and their families.

Companion animals in families of children with autism spectrum disorder: Lessons learned from caregivers.

ABSTRACTCompanion animals (i.e., pets) have been increasingly recognized for the roles they play in families, including those with children with Autism Spectrum Disorder (ASD). This cross-sectional study explored the unique functions of companion animals within families with a child with ASD. Phenomenology was used to analyze the responses of participants (N = 338) who responded to a survey offered through the Interactive Autism Network. The study initially focused on dogs; however, the analysis was forced to expand to other species due to the data provided by participants. Seven major themes emerged: bonding and benefits, learning opportunities, barriers, grief, fit (match of family characteristics with those of the companion animal), safety, and alternative animals. Successful fit between companion animals and families was often described as necessary for beneficial functions. Barriers included necessary cost and time, as well as required supervision of interactions to enhance safety of the children and animals.

Mothers' Reactions to Their Child's ASD Diagnosis: Predictors That Discriminate Grief from Distress.

We examined whether grief and general distress reactions characterized mothers' reactions to their child's ASD diagnosis, and whether these two types of reactions had unique predictors. Hierarchical regression analyses were conducted on data collected from 362 mothers recruited from the Interactive Autism Network (IAN). The mothers were predominantly white, highly educated, and married. Grief reactions were positively associated with perceiving ASD as a loss and as unjust. Distress was positively associated with previous mental health issues, mothers' reports of their child's aggressive behavior, identity ambiguity, and less social support. Internal attributions were positively related to grief and distress. Discussion focuses on why the distinction between these two types of affective reactions may be useful for parents and professionals.

Psychometric characteristics of the mental health crisis assessment scale in youth with autism spectrum disorder.

Youth with autism spectrum disorder (ASD) exhibit high rates of psychopathology. These symptoms can pose a risk of injury to self or others when the child is in crisis. Despite this danger, there are no instruments available to identify those with ASD who are at risk or actively in crisis. This study examined the psychometric properties of the Mental Health Crisis Assessment Scale (MCAS), a 28 item parent report measure. The MCAS was administered to the parents of 606 children and young adults (aged 3-25years, M age=13years, SD=5years) enrolled in the Interactive Autism Network, an online registry of families raising a child with ASD. The MCAS asks parents to rate the severity of various emotional and behavioral symptoms exhibited by their child. The parent then selects the behavior they perceive as the most dangerous behavior and rates the acuity of as well as their efficacy in managing this behavior. The MCAS was tested for internal consistency, construct validity, criterion validity, and convergent validity. The MCAS demonstrated strong internal consistency (Total Scale Cronbach's α=.88). The exploratory and confirmatory factor analyses suggested that a two factor (acuity and behavioral efficacy) model fit the data well, providing evidence of construct validity. Criterion validity, which was assessed by comparing the MCAS to clinician determination of crisis, indicated high levels of agreement (ROC=.85). Strong positive relationships emerged between the MCAS and measures of family distress (r=.56), parental stress, and frustration (r=.48), and use of emergency psychiatric services (OR=24.2, 95% CI: 8.6-68.2), indicating convergent validity of the measure (all p<.05). Results of the psychometric analyses suggest the MCAS appears to be a promising tool that can measure mental health crises in youth with ASD.

Peer Victimization and Educational Outcomes in Mainstreamed Adolescents with Autism Spectrum Disorder (ASD).

The majority of adolescents with ASD spend a significant amount of the school day in general education settings; yet, many of these students exhibit problems at school. The current manuscript examined whether specific types of peer victimization were associated with a range of educational outcomes. Participants from study 1 included parents of 1221 adolescents from the Interactive Autism Network. Study 2 included 54 adolescent males and one of their parents that were recruited from a clinic registry. Both studies found that all types of victimization were associated with educational outcomes. These findings indicate that, in addition to improving overall well-being of students with ASD, reducing peer victimization could have positive effects on educational performance of these students.

Families of Adolescents with Autism: Facing the Future

The purpose of this report, drawn from a larger study, was to investigate family adaptation in families of adolescents with autism spectrum disorder and to determine whether family adaptation is influenced by: daily stressors, uncertainty regarding the adolescent's disability, and use of coping strategies on the family's adaptation process. Selection of variables was guided by McCubbin's Family Resilience Model. A total of 115 family members, all members of Interactive Autism Network, participated and completed the study using web-based technology. Hierarchical multiple regression analysis showed the independent variables, except use of coping strategies, had a statistically significant relationship with family adaptation. Because few studies have focused on this population, the findings may assist families and health care professionals during this important family life developmental milestone.

Quantitative autism symptom patterns recapitulate differential mechanisms of genetic transmission in single and multiple incidence families.

BackgroundPrevious studies have demonstrated aggregation of autistic traits in undiagnosed family members of children with autism spectrum disorder (ASD), which has significant implications for ASD risk in their offspring. This study capitalizes upon a large, quantitatively characterized clinical-epidemiologic family sample to establish the extent to which family transmission pattern and sex modulate ASD trait aggregation.MethodsData were analyzed from 5515 siblings (2657 non-ASD and 2858 ASD) included in the Interactive Autism Network. Autism symptom levels were measured using the Social Responsiveness Scale (SRS) and by computing Diagnostic and Statistical Manual of Mental Disorders—Fifth Edition (DSM-5) symptom scores based on items from the SRS and Social Communication Questionnaire. Generalized estimating equation models evaluated the influence of family incidence types (single versus multiple incidence families; male-only ASD-affected families versus families with female ASD-affected children), diagnostic group (non-ASD children with and without a history of language delay with autistic speech and ASD-affected children), and sibling sex on ASD symptom levels.ResultsNon-ASD children manifested elevated ASD symptom burden when they were members of multiple incidence families—this effect was accentuated for male children in female ASD-containing families—or when they had a history of language delay with autistic qualities of speech. In this sample, ASD-affected children from multiple incidence families had lower symptom levels than their counterparts in single incidence families. Recurrence risk for ASD was higher for children from female ASD-containing families than for children from male-only families.ConclusionsSex and patterns of family transmission modulate the risk of autism symptom burden in undiagnosed siblings of ASD-affected children. Identification of these symptoms/traits and their molecular genetic causes may have significant implications for genetic counseling and for understanding inherited liabilities that confer risk for ASD in successive generations. Autism symptom elevations were more dramatic in non-ASD children from multiple incidence families and those with a history of language delay and autistic qualities of speech, identifying sub-groups at substantially greater transmission risk. Higher symptom burden and greater recurrence in children from female ASD-containing families indicate that familial aggregation patterns are further qualified by sex-specific thresholds, supportive of the notion that females require a higher burden of deleterious liability to cross into categorical ASD diagnosis.Electronic supplementary materialThe online version of this article (doi:10.1186/s13229-015-0050-z) contains supplementary material, which is available to authorized users.

Validity and reliability of the Medical Outcomes Study Short-Form Health Survey version 2 (SF-12v2) among adults with autism

BackgroundThe purpose of the study was to assess the validity and reliability of the Medical Outcomes Study Short Form-12 version 2 (SF-12v2) instrument among adults with autism. MethodsStudy data was collected using a cross-sectional online survey of adults with autism enrolled with the Interactive Autism Network (N=291). Factorial validity was assessed using confirmatory factor analysis technique. Item–scale correlations were examined for convergent validity. Known-groups validity was assessed by examining the variation in Physical Component Summary (PCS) and Mental Component Summary (MCS) scores by autism severity. Cronbach's alpha was determined for internal consistency reliability. Floor and ceiling effects were also assessed. ResultsA two-factor model with correlated error terms was found to have a good fit. The PCS scale strongly correlated with the underlying items representing the scale. The MCS scale had strong to moderate correlation with its underlying items. For known-groups validity, the MCS score varied as expected with lower score observed among adults with high severity as compared to low severity; however, PCS score varied inversely. Internal consistent reliability of the SF-12v2 was good, and there were no floor and ceiling effects. ConclusionsExcept for known-groups validity, all other psychometric indicators performed well for the SF-12v2.

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 = 13.1 years) and n = 143 adults with autism spectrum disorder aged 18-58 years (M = 25.0 years, standard deviation = 8.2 years) whose information was provided by legal guardians. Although the self-reporting subsample had much higher rates of employment, marriage/partnership, and independent living than are typically seen in autism spectrum disorder outcome studies, they remained underemployed and had strikingly high rates of comorbid disorders. Data on both descriptive outcomes and rated priorities converged across subsamples to indicate the need for more adult research on life skills, treatments, co-occurring conditions, and vocational and educational opportunities. Stakeholders also placed priority on improving public services, health care access, and above all, public acceptance of adults with autism spectrum disorder. Findings must be interpreted in light of the self-reporting subsample's significant proportion of females and of later-diagnosed individuals. This study underscores the need for lifespan research; initiatives will benefit from incorporating information from the unique perspectives of adults with autism spectrum disorder and their families.

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. We find that the age-of-onset distribution for males and females is identical, suggesting that ASD may be an autosomal disorder. The ASD monozygote concordance rate in twin data predicted by the genetic multimutation model is shown to be compatible with the observed rates. If ASD is caused entirely by genetics, then the ASD concordance rate of a cohort of monozygote twins should approach 100% as the youngest pair of twins in the cohort passes 10 years of age, a prediction that constitutes a critical test of the genetic hypothesis. Thus, by measuring the ASD concordance rate as a cohort of monozygote twins age, the hypothesis that this disorder is caused entirely by genetic mutations can be tested.

Internet-Based, Randomized, Controlled Trial of Omega-3 Fatty Acids for Hyperactivity in Autism

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. E-mail invitations were sent to parents of children aged 5 to 8 years enrolled in the Interactive Autism Network. All study procedures, including screening, informed consent, and collection of outcome measures took place over the Internet. The primary outcome measures were parent- and teacher-rated changes in hyperactivity on the Aberrant Behavior Checklist (ABC-H). During the 6-week recruitment period, 57 children from 28 states satisfied all eligibility criteria and were randomly assigned to 1.3 grams of omega-3 fatty acids or an identical placebo daily for 6 weeks. Outcome assessments were obtained from all 57 participants and 57 teachers, and the study was completed in 3 months. Children in the omega-3 fatty acid group had a greater reduction in hyperactivity (-5.3 points) compared to the placebo group (-2.6 points), but the difference was not statistically significant (1.9-point greater improvement in the omega-3 group, 95% CI = -2.2 to 5.2). Adverse events were rare and not associated with omega-3 fatty acids. Participant feedback was positive. Internet-based, randomized controlled trials of therapies in children with ASD are feasible and may lead to marked reductions in the time and cost of completing trials. A larger sample size is required to definitively determine the efficacy of omega-3 fatty acids. Clinical trial registration information-Omega-3 Fatty Acids for Hyperactivity Treatment in Autism Spectrum Disorder; http://clinicaltrials.gov; NCT01694667.

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. Categorically-defined ASD was based on clinical diagnoses. DeFries-Fulker and liability threshold models examined etiologic influences. Very high heritability was observed for extreme autism symptom levels ([Formula: see text]). Extreme levels of social and repetitive behavior symptoms were strongly influenced by common genetic factors. Heritability of categorically-defined ASD diagnosis wascomparativelylow (.21, 95% CI 0.15-0.28). High heritability of extreme autism symptom levels confirms previous observations of strong genetic influences on autism. Future studies will require large, carefully ascertained family pedigrees and quantitative symptom measurements.

Health-related quality of life and its determinants among adults with autism

The purpose of this study was to determine health-related quality of life (HRQOL) among adults with autism, and compare it to the HRQOL of the general adult population in the United States (US). Factors predicting HRQOL of adults with autism were also identified. A cross-sectional online survey was conducted to gather study information. From adults with autism registered with the Interactive Autism Network (IAN), those aged 18 years and above and having the capacity to self-report were identified and approached for study participation. The final sample included 291 adults with autism. One-way t-test revealed adults with autism to have significantly lower physical and mental HRQOL than their counterparts in the US population. Using linear regression analysis, modifiable factors including social support and coping along with other socio-demographic and medial characteristics were identified as significant predictors of physical and mental HRQOL. Greater perceived adequacy of social support from friends and family was associated with better HRQOL, while greater use of maladaptive coping was associated with lower HRQOL. Clinicians and other health interventionist should consider assessing these factors among adults with autism, and provide necessary capabilities to these adults with the aim of improving their HRQOL.

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. Social communication and interaction and restricted/repetitive behavior symptoms were obtained using caregiver-reports on the Social Responsiveness Scale. Demographic and clinical correlates were covariates in regression models predicting social communication and interaction and restricted/repetitive behavior symptoms. Logistic regression and receiver operating characteristic curve analyses evaluated the incremental validity of social communication and interaction and restricted/repetitive behavior domains over and above global autism symptoms. Autism spectrum disorder diagnosis was the strongest correlate of caregiver-reported social communication and interaction and restricted/repetitive behavior symptoms. The presence of comorbid diagnoses also increased symptom levels. Social communication and interaction and restricted/repetitive behavior symptoms provided significant, but modest, incremental validity in predicting diagnosis beyond global autism symptoms. These findings suggest that autism spectrum disorder diagnosis is by far the largest determinant of quantitatively measured autism symptoms. Externalizing (attention deficit hyperactivity disorder) and internalizing (anxiety) behavior, low cognitive ability, and demographic factors may confound caregiver-report of autism symptoms, potentially necessitating a continuous norming approach to the revision of symptom measures. Social communication and interaction and restricted/repetitive behavior symptoms may provide incremental validity in the diagnosis of autism spectrum disorder.