Autism Treatment Network Research Articles

Sleep disturbance and other co-occurring conditions in autistic children: A network approach to understanding their inter-relationships.

Autistic children frequently have one or more co-occurring psychological, behavioral, or medical conditions. We examined relationships between child behaviors, sleep, adaptive behavior, autistic traits, mental health conditions, and health in autistic children using network analysis. Network analysis is hypothesis generating and can inform our understanding of relationships between multiple conditions and behaviors, directing the development of transdiagnostic treatments for co-occurring conditions. Participants were two child cohorts from the Autism Treatment Network registry: ages 2-5 years (n = 2372) and 6-17 years (n = 1553). Least absolute-shrinkage and selection operator (LASSO) regularized partial correlation network analysis was performed in the 2-5 years cohort (35 items) and the 6-17 years cohort (36 items). The Spinglass algorithm determined communities within each network. Two-step expected influence (EI2) determined the importance of network variables. The most influential network items were sleep difficulties (2 items) and aggressive behaviors for young children and aggressive behaviors, social problems, and anxious/depressed behavior for older children. Five communities were found for younger children and seven for older children. Of the top three most important bridge variables, night-waking/parasomnias and anxious/depressed behavior were in both age-groups, and somatic complaints and sleep initiation/duration were in younger and older cohorts respectively. Despite cohort differences, sleep disturbances were prominent in all networks, indicating they are a transdiagnostic feature across many clinical conditions, and thus a target for intervention and monitoring. Aggressive behavior was influential in the partial correlation networks, indicating a potential red flag for clinical monitoring. Other items of strong network importance may also be intervention targets or screening flags.

A Practice Pathway for the Treatment of Night Wakings in Children with Autism Spectrum Disorder

Children with autism spectrum disorder (ASD) report high rates of sleep problems. In 2012, the Autism Treatment Network/ Autism Intervention Research Network on Physical Health (ATN/AIR-P) Sleep Committee developed a pathway to address these concerns. Since its publication, ATN/AIR-P clinicians and parents have identified night wakings as a refractory problem unaddressed by the pathway. We reviewed the existing literature and identified 76 scholarly articles that provided data on night waking in children with ASD. Based on the available literature, we propose an updated practice pathway to identify and treat night wakings in children with ASD.

Predicting future sleep problems in young autistic children.

Sleep problems are common in autistic children and negatively impact daytime functioning. A method for predicting sleep problems could help with treatment and prevention of such problems. This study aimed to determine predictors of sleep problems among young autistic children. Study participants consisted of autistic children aged 2-5 years who did not have sleep problems at a first visit (Autism Treatment Network Registry) and had sleep data available at a subsequent visit (Registry Call-Back Assessment study). Sleep problems for five study cohorts of children were defined by different methods, including parent questionnaires and parent- or clinician-report of sleep problems. We found that self-injurious behavior, sensory issues, dental problems, and lower primary caregiver education level were significant risk factors of future sleep problems. These predictors may help clinicians provide prevention or earlier treatment for children who are at risk of developing sleep problems.

Characteristics of the autism spectrum disorder gastrointestinal and related behaviors inventory in children.

Gastrointestinal (GI) symptoms are one of the prevalent co‐occurring issues in autism spectrum disorder (ASD), though the range of symptom frequency estimates varies dramatically across studies, which can limit the further research of GI issues in ASD as well as potential treatment strategies. The wide range of prevalence estimates is partly due to the lack of standardized, validated measures of GI symptoms among people with ASD. The goal of this study was to (1) develop a measure, which included non‐verbal and mealtime behaviors, to assess for GI symptoms and (2) evaluate its psychometric characteristics. This was accomplished by drawing on two existing tools, Autism Treatment Network Gastrointestinal Inventory and the Brief Autism Mealtime Behavior Inventory, and deriving new items, to create the “ASD Gastrointestinal and Related Behaviors Inventory” (ASD‐GIRBI). The ASD‐GIRBI was piloted in an online registry of families with a child with ASD. A psychometric analysis was carried out in a sample of 334 children aged 6–17 years with ASD, resulting in a 36‐item tool. The Cronbach's alpha for the overall scale was 0.88. Exploratory factor analysis identified a seven‐factor model (1. Bowel movement pain; 2. Aggressive or disruptive during mealtimes; 3. Particular with foods; 4. Abdominal pain and upset stomach; 5. Refusing food; 6. Constipation and encopresis; 7. Motor or other behaviors). Following validation in an independent sample with clinical evaluation of GI symptoms, this tool will be helpful for both research and clinical purposes.

Parent Activation Measure for Developmental Disabilities (PAM-DD) in Caregivers of Individuals With ASD

Activation refers to patients’ belief, knowledge, ability, and persistence to manage care. The concept is adapted to parent activation in developmental disorders. This study examined the psychometrics of the Parent Activation Measure for Developmental Disabilities (PAM-DD) and factors related to parent activation in ASD. Data from 658 caregivers of children with ASD in the Autism Treatment Network Registry Call Back Assessment study were analyzed. The actual ordering of the scale items was inconsistent with the assumptions of a Guttman scaling. Factor analysis revealed two PAM-DD factors. Lower child symptom severity was related to higher Factor 1 and lower Factor 2 activation. Future studies should use caution when treating PAM-DD as a Guttman and unidimensional scale.

Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study.

Caregiver strain is the adverse impact that parents of children with emotional and behavioral issues including autism often experience (e.g. negative consequences of caregiving such as financial strain and social isolation; negative feelings that are internal to the caregiver such as worry and guilt; and negative feelings directed toward the child such as anger or resentment). This study showed that on average caregiver strain did not significantly change in North American parents of children with autism during a 2-year period. Improved caregiver strain was linked to improved child functioning and behavior. Routine assessment of caregiver strain and referral to evidence-based programming and supports may help alleviate some of the burden that families of children with autism commonly experience.

A cluster analysis of daily living skills in school aged children with autism spectrum disorder

For individuals with autism spectrum disorder (ASD) daily living skills (DLS) fall below chronological age and have been linked to factors such as language. Given the impact of DLS on daily life, it is critical to gain a comprehensive understanding of DLS profiles in children to guide effective treatment. Using a large dataset from the Autism Speaks Autism Treatment Network, the current study sought to (1) examine whether there are subgroups of children with ASD defined by both their Vineland-II DLS scores and language abilities and (2) explore the relationship between internalizing and externalizing symptoms on subgroups using the Child Behavior Checklist. A five-cluster solution was found, but one group was subsequently dropped. Four clusters were examined: Low Language-Low DLS (n = 143); Low-Language High DLS (n = 170); High Language-Low DLS (n = 189); and High Language-High DLS (n = 203). The High Language-Low DLS group had significantly higher internalizing and externalizing symptoms as compared to the other groups. The results highlight the importance of targeting DLS in school-age children with ASD, especially for those with comorbid internalizing and externalizing symptom to ensure that the gap between age and functional DLS does not continue to widen.

Comorbid Psychopathology, Challenging Behavior, Sensory Issues, Adaptive Behavior and Quality of Life in Children and Adolescents with Autism Spectrum Disorder

ABSTRACT Aim: Comorbid psychopathology refers to having a diagnosis of two or more co-occurring psychological disorders. The current study investigated the differences between children and adolescents with no-mild, moderate and severe comorbid psychopathology in children and adolescents with ASD. Method: Parents of 133 children completed the Autism Spectrum Disorder-Comorbid for Children, Behavior Problems Inventory-Short Form, Pediatric Quality of Life Inventory, Vineland Adaptive Behavior Scales, Social Communication Questionnaire, Short Sensory Profile, and Behavioral/Educational Interventions and Complementary/Alternative Medicine (CAM) Interventions of the Autism Treatment Network Registry Parent Baseline Assessment. Results: A significant difference was found between severity of comorbid psychopathology and all types of challenging behavior and all sensory issues except movement. A small effect size was also found between comorbid psychopathology and quality of life. Conclusion: The findings from this study show significant difficulties associated with those with comorbid psychopathology in ASD in challenging behavior, sensory issues and quality of life.

Validation of the Health-Related Independence for Young Adults with Autism Spectrum Disorder Measure- Caregiver Version.

Little is known about Young adults with Autism Spectrum Disorder (YA-ASD) health, healthcare and safety needs. This study describes the validation of a health care transition measure for YA-ASD, the Health-Related Independence (HRI). We collected data from caregivers (n = 490) at five Autism Treatment Network sites and compared the psychometric properties of HRI to the gold standard (STARx) and other validated measures. A Confirmatory Factor Analysis and item culling resulted in 30 items addressing six subscales. Content, criterion, and construct validity and internal consistency indicated high validity and reliability for the scale and subscales. HRI is a validated caregiver-report measure of YA-ASD's self-management, safety, and transition skills. This novel measure will be a useful tool in clinics, intervention development, and research.

Racial and Ethnic Differences in Behavioral Problems and Medication Use Among Children With Autism Spectrum Disorders.

We examined racial and ethnic differences in the prevalence of behavioral problems measured by the Child Behavioral Checklist (CBCL), sleep disturbances measured by the Child Sleep Habits Questionnaire (CSHQ), and medication use among children with Autism Spectrum Disorders (ASD). We analyzed data from the Autism Treatment Network (ATN) dataset for 2,576 children ages 6 to 18 years of age diagnosed with ASD. Multivariable logistic regression accounting for age, gender, Diagnostic and Statistical Manual of Mental Disorders (4th Edition - Text Revision), diagnosis (Autistic Disorder, PDD-NOS, Asperger's Disorder), and parents' education did not show any racial or ethnic differences in behavioral challenges, conduct problems, or sleep disturbances for any of the groups, but Black children had lower odds of Total Problem Behaviors and Asian children had lower odds of Hyperactivity compared to White children. As a group, children from racial and ethnic minorities had lower odds of Total Problem Behaviors and Conduct Problems compared to White children. Hispanic children had lower odds of medication use for Behavioral Challenges, Total Problem Behaviors, Hyperactivity, and Conduct Problems. Asian children had lower odds of medication use for Behavioral Challenges, Total Problem Behaviors, and Hyperactivity; and had close to lower odds in medication use for Conduct Problems. Black children had lower odds for medication use for Total Problem Behaviors only. As a group, children from racial and ethnic minorities had lower odds for medication use for Behavioral Challenges, Total Problem Behaviors, Hyperactivity, and Conduct problems, but not for Sleep Disturbances. While these results are consistent with previous studies showing that White children are significantly more likely to receive psychotropic medication compared to children from racial and ethnic minority groups, we found no such differences for sleep challenges, suggesting that they are more consistently identified and equitably treated than other behavioral problems associated with ASD. We draw upon Andersen's (1995) Behavioral Model of Healthcare Use to suggest predisposing, enabling, and needs factors that may contribute to this pattern of racial and ethnic differences in the use of medications among children ASD.

Vision care among school-aged children with autism spectrum disorder in North America: Findings from the Autism Treatment Network Registry Call-Back Study.

Children with autism are at high risk for vision problems, which may compound core social and behavioral symptoms if untreated. Despite recommendations for school-aged children with autism to receive routine vision testing by an eye care practitioner (ophthalmologist or optometrist), little is known about their vision care. This study, therefore, examined vision care among 351 children with autism ages 6-17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Parents were surveyed using the following vision care measures: (1) child's vision was tested with pictures, shapes, or letters in the past 2 years; (2) child's vision was tested by an eye care practitioner in the past 2 years; (3) child was prescribed corrective eyeglasses; and (4) child wore eyeglasses as recommended. Sociodemographic characteristics such as parent education level, child functioning characteristics such as child communication abilities, and family functioning characteristics such as caregiver strain were also assessed in relationship to vision care. Although 78% of children with autism had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Differences in vision care were additionally found among children with autism by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism do not receive recommended vision care and highlight potentially modifiable disparities in vision care.

Families' Experiences With Family Navigation Services in the Autism Treatment Network.

Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN's effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families' experiences with FN services. Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3. Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources. Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.

Family Engagement in the Autism Treatment and Learning Health Networks.

Family involvement in the Autism Intervention Research Network on Physical Health, the Autism Treatment Network, and the Autism Learning Health Network, jointly the Autism Networks, has evolved and grown into a meaningful and robust collaboration between families, providers, and researchers. Family involvement at the center of the networks includes both local and national network-wide coproduction and contribution. Family involvement includes actively co-authoring research proposals for large grants, equal membership of network committees and workgroups, and formulating quality improvement pathways for local recruitment efforts and other network initiatives. Although families are involved in every aspect of network activity, families have been the driving force of specifically challenging the networks to concentrate research, education, and dissemination efforts around 3 pillar initiatives of addressing comorbidities of anxiety, attention-deficit/hyperactivity disorder, and irritability in autism during the networks' upcoming funding cycle. The expansion of the networks' Extension for Community Healthcare Outcomes program is an exciting network initiative that brings best practices in autism care to community providers. As equal hub members of each Extension for Community Healthcare Outcomes team, families ensure that participants are intimately cognizant of family perspectives and goals. Self-advocacy involvement in the networks is emerging, with plans for each site to have self-advocacy representation by the spring of 2020 and ultimately forming their own coproduction committee. The Autism Treatment Network, the Autism Intervention Research Network on Physical Health, and the Autism Learning Health Network continue to be trailblazing organizations in how families are involved in the growth of their networks, production of meaningful research, and dissemination of information to providers and families regarding emerging work in autism spectrum disorders.

The Autism Treatment Network: Bringing Best Practices to All Children With Autism.

The Autism Treatment Network and Autism Intervention Research Network on Physical Health were established in 2008 with goals of improving understanding of the medical aspects of autism spectrum disorders. Over the past decade, the combined network has conducted >2 dozen clinical studies, established clinical pathways for best practice, developed tool kits for professionals and families to support better care, and disseminated these works through numerous presentations at scientific meetings and publications in medical journals. As the joint network enters its second decade continuing this work, it is undergoing a transformation to increase these activities and accelerate their incorporation into clinical care at the primary care and specialty care levels. In this article, we describe the past accomplishments and present activities. We also outline planned undertakings such as the establishment of the Autism Learning Health Network, the increasing role of family members as co-producers of the work of the network, the growth of clinical trials activities with funding from foundations and industry, and expansion of work with primary care practices and autism specialty centers. We also discuss the challenges of supporting network activities and potential solutions to sustain the network.

Factors Associated With Seizure Onset in Children With Autism Spectrum Disorder.

Children with autism spectrum disorder (ASD) have a higher prevalence of epilepsy compared with general populations. In this pilot study, we prospectively identified baseline risk factors for the development of seizures in individuals with ASD and also identified characteristics sensitive to seizure onset up to 6 years after enrollment in the Autism Speaks Autism Treatment Network. Children with ASD and no history of seizures at baseline who either experienced onset of seizures after enrollment in the Autism Treatment Network or remained seizure free were included in the analysis. Among 472 qualifying children, 22 (4.7%) experienced onset of seizures after enrollment. Individuals who developed seizures after enrollment exhibited lower scores at baseline on all domains of the Vineland Adaptive Behavior Scales, greater hyperactivity on the Aberrant Behavior Checklist (25.4 ± 11.8 vs 19.2 ± 11.1; P = .018), and lower physical quality of life scores on the Pediatric Quality of Life Inventory (60.1 ± 24.2 vs 76.0 ± 18.2; P < .001). Comparing change in scores from entry to call-back, adjusting for age, sex, length of follow-up, and baseline Vineland II composite score, individuals who developed seizures experienced declines in daily living skills (-8.38; 95% confidence interval -14.50 to -2.50; P = .005). Adjusting for baseline age, sex, and length of follow-up, baseline Vineland II composite score was predictive of seizure development (risk ratio = 0.95 per unit Vineland II composite score, 95% confidence interval 0.92 to 0.99; P = .007). Individuals with ASD at risk for seizures exhibited changes in adaptive functioning and behavior.

Therapy and Psychotropic Medication Use in Young Children With Autism Spectrum Disorder.

Guidelines suggest young children with autism spectrum disorder (ASD) receive intensive nonpharmacologic interventions. Additionally, associated symptoms may be treated with psychotropic medications. Actual intervention use by young children has not been well characterized. Our aim in this study was to describe interventions received by young children (3-6 years old) with ASD. The association with sociodemographic factors was also explored. Data were analyzed from the Autism Speaks Autism Treatment Network (AS-ATN), a research registry of children with ASD from 17 sites in the United States and Canada. AS-ATN participants receive a diagnostic evaluation and treatment recommendations. Parents report intervention use at follow-up visits. At follow-up, 805 participants had data available about therapies received, and 613 had data available about medications received. The median total hours per week of therapy was 5.5 hours (interquartile range 2.0-15.0), and only 33.4% of participants were reported to be getting behaviorally based therapies. A univariate analysis and a multiple regression model predicting total therapy time showed that a diagnosis of ASD before enrollment in the AS-ATN was a significant predictor. Additionally, 16.3% of participants were on ≥1 psychotropic medication. A univariate analysis and a multiple logistic model predicting psychotropic medication use showed site region as a significant predictor. Relatively few young children with ASD are receiving behavioral therapies or total therapy hours at the recommended intensity. There is regional variability in psychotropic medication use. Further research is needed to improve access to evidence-based treatments for young children with ASD.

Service Use Classes Among School-aged Children From the Autism Treatment Network Registry.

Use of specific services may help to optimize health for children with autism spectrum disorder (ASD); however, little is known about their service use patterns. We aimed to (1) define service use groups and (2) determine associations of sociodemographic, developmental, behavioral, and health characteristics with service use groups among school-aged children with ASD. We analyzed cross-sectional data on 1378 children aged 6 to 18 years with an ASD diagnosis from the Autism Speaks Autism Treatment Network registry for 2008-2015, which included 16 US sites and 2 Canadian sites. Thirteen service use indicators spanning behavioral and medical treatments (eg, developmental therapy, psychotropic medications, and special diets) were examined. Latent class analysis was used to identify groups of children with similar service use patterns. By using latent class analysis, school-aged children with ASD were placed into 4 service use classes: limited services (12.0%), multimodal services (36.4%), predominantly educational and/or behavioral services (42.6%), or predominantly special diets and/or natural products (9.0%). Multivariable analysis results revealed that compared with children in the educational and/or behavioral services class, those in the multimodal services class had greater ASD severity and more externalizing behavior problems, those in the limited services class were older and had less ASD severity, and those in the special diets and/or natural products class had higher income and poorer quality of life. In this study, we identified 4 service use groups among school-aged children with ASD that may be related to certain sociodemographic, developmental, behavioral, and health characteristics. Study findings may be used to better support providers and families in decision-making about ASD services.

Access to Dental Visits and Correlates of Preventive Dental Care in Children with Autism Spectrum Disorder.

Dental care received by children in the Autism Speaks Autism Treatment Network (ATN) was compared to National Survey of Children's Health (NSCH) data for children without special healthcare needs and children with parent-reported ASD. Correlates of obtained preventive dental services were examined within the ATN sample. Participants included 375 families of children ages 4 to 17 enrolled in the ATN. ATN families reported levels of preventive dental care that were similar to, or exceeded, NSCH-reported care. However, disparities in obtained preventive dental services emerged within the ATN sample. Lower intellectual functioning was the most consistent correlate of reduced access to and completion of preventive dental care. Implications for developing system-wide supports and targeted interventions are discussed.

Primary caregiver education level and sleep problems in children with autism spectrum disorder

In children with autism spectrum disorder, there have been equivocal results regarding primary caregiver education level and its influence on sleep. Thus, we assessed if lower primary caregiver education level is associated with more sleep problems. We evaluated 4,636 children with autism spectrum disorder in the Autism Speaks Autism Treatment Network's United States and Canadian registry, whose caregivers completed the Children's Sleep Habits Questionnaire. Using regression analysis, there was an association between lower primary caregiver education level and more sleep problems. Secondary analyses demonstrated that younger age, Hispanic ethnicity, higher IQ, autism diagnosis and lower adaptive function were also associated with more sleep problems. The finding that lower primary caregiver education level was associated with increased sleep problems in a large sample of children with autism spectrum disorder highlights the importance of screening for risk factors affecting sleep to help moderate sleep problems.

Self-determination in young adults with autism spectrum disorder

This study examined rates of and contributing factors to self-determination among young adults with autism spectrum disorder. Caregivers of young adults with autism spectrum disorder, 16-25 years, from five Autism Treatment Network sites completed surveys about their young adults' transition experiences including the American Institutes for Research Self-Determination measure. Data were analyzed using univariate and multivariate analysis. Caregivers (n = 479) reported their young adults with autism spectrum disorder as having moderate overall self-determination (x = 38; standard deviation = 9.04) with low capacity (x = 15.3; standard deviation = 5.67) and high opportunities at home (x = 23.1; standard deviation = 4.59). Young adults with autism spectrum disorder with intellectual disability or severe autism spectrum disorder symptomology experience significant disparities in overall self-determination compared to those without intellectual disability and less frequent symptom expression and severity. Barring severity indicators, there were few significant predictors of self-determination. Findings show a breakdown in self-determination skill-building. Young adults with autism spectrum disorder with intellectual disability or severe symptomology experienced significant disparities in self-determination. These findings show that current promotion of self-determination is not meeting the needs of young adults with autism spectrum disorder. Future interventions must identify what supports young adults with autism spectrum disorder need to capitalize on these opportunities to be independent and exert autonomy in their daily lives.