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.

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.

Through a retrospective chart review, we identified every patient between 8 and 19 years of age with a documented ASD diagnosis admitted to a pediatric medical unit over a 5-year period. We performed a detailed review of each admission, with a focus on factors hypothesized to be correlated with risk of agitation.

One or more episode of agitation occurred during 37 (12.4%) of the 299 admissions and for 31 (18.5%) of the 168 patients who met inclusion criteria. History of agitation (risk ratio 21.9 [95% confidence interval 5.4–88.3] for history of severe agitation; P < .001) and documented sensory sensitivities (risk ratio 2.3 [95% confidence interval 1.3–3.8]; P < .001) were associated with a significantly increased risk of agitation during admission. History of past psychiatric admissions was associated with increased risk before, but not after, controlling for history of agitation and sensory sensitivities. Psychiatric comorbidity, intellectual disability, acute pain on admission, number of preadmission psychotropic medications, Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition ASD diagnosis, age, and sex were not significantly associated with increased risk.

Hospitalization can be challenging for patients with ASD. A subset of these patients experience episodes of agitation during admission, posing a safety risk to patients and staff. Characterizing risk factors associated with these behaviors may allow for identification of at-risk patients and guide targeted intervention to prevent negative behavioral outcomes.

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.

Qualitative interviews were conducted with parents and ED service providers, drawing on a grounded theory approach. Interviews were audio recorded, transcribed verbatim, and analyzed by using established constant comparison methods. Data were reviewed to appraise the reported presence or absence of PFCC components.

Fifty-three stakeholders (31 parents of children with ASD and 22 ED service providers) participated in interviews. Results revealed the value of PFCC in autism-based ED care. Helpful attributes of care were a person-centered approach, staff knowledge about ASD, consultation with parents, and a child-focused environment. Conversely, a lack of staff knowledge and/or experience in ASD, inattention to parent expertise, insufficient communication, insufficient family orientation to the ED, an inaccessible environment, insufficient support, a lack of resources, and system rigidities were identified to impede the experience of care.

Findings amplify PFCC as integral to effectively serving children with ASD and their families in the ED. Resources that specifically nurture PFCC emerge as practice and program priorities.

Participants included children (<36 months old) with autism spectrum disorder and caregivers. Participants were randomly assigned to P-ESDM only (n = 31) or P-ESDM plus MBSR (n = 30). Data were collected at baseline, midtreatment, the end of treatment, and 1, 3, and 6 months posttreatment. Multilevel models with discontinuous slopes were used to test for group differences in outcome changes over time.

Both groups improved during active treatment in all subdomains of parent stress (β = –1.42, –1.25, –0.92; P < 0.001), depressive symptoms, and anxiety symptoms (β = –0.62 and –0.78, respectively; P < 0.05). Parents who received MBSR had greater improvements than those receiving P-ESDM only in parental distress and parent-child dysfunctional interactions (β = –1.91 and –1.38, respectively; P < 0.01). Groups differed in change in mindfulness during treatment (β = 3.15; P < .05), with P-ESDM plus MBSR increasing and P-ESDM declining. Treatment group did not significantly predict change in depressive symptoms, anxiety symptoms, or life satisfaction. Differences emerged on the basis of parent sex, child age, and child behavior problems.

Results suggest that manualized, low-intensity stress-reduction strategies may have long-term impacts on parent stress. Limitations and future directions are described.

Three 2-hour focus groups were conducted with 23 parents of children with ASD <8 years old. Qualitative analysis employed an iterative and systematic approach to identify key themes related to parents’ experiences.

Eight themes related to communication about early ASD concerns emerged: characteristics of the child that caused parental concerns, the response of others when the parent brought up concerns, how concerns were brought up to the parent by others, parental responses when others mentioned concerns, information seeking, barriers to and facilitators of acting on concerns, and recommendations to providers. Parent responses suggest the need for increased use of shared decision-making strategies and areas for process improvements.

Primary care providers can play a key role in helping parents with ASD concerns make decisions about how to move forward and pursue appropriate referrals. Strategies include responding promptly to parental concerns, helping them weigh options, and monitoring the family’s progress as they navigate the service delivery system.

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.

We systematically reviewed evidence for universal screening of children for ASD in PC.

We searched Medline, PsychInfo, Educational Resources Informational Clearinghouse, and Cumulative Index of Nursing and Allied Health Literature.

We included studies in which researchers report psychometric properties of screening tools in unselected populations across PC and PC-like settings.

At least 2 authors reviewed each study, extracted data, checked accuracy, and assigned quality ratings using predefined criteria.

We found evidence for moderate to high positive predictive values for ASD screening tools to identify children aged 16 to 40 months and 1 study for ≥48 months in PC and PC-like settings. Limited evidence evaluating sensitivity, specificity, and negative predictive value of instruments was available. No studies directly evaluated the impact of screening on treatment or harm.

Potential limitations include publication bias, selective reporting within studies, and a constrained search.

ASD screening tools can be used to accurately identify percentages of unselected populations of young children for ASD in PC and PC-like settings. The scope of challenges associated with establishing direct linkage suggests that clinical and policy groups will likely continue to guide screening practices. ASD is a common neurodevelopmental disorder associated with significant life span costs.^1,2 Growing evidence supports functional gains and improved outcomes for young children receiving intensive intervention, so early identification on a population level is a pressing public health challenge.^3,4