autism

Promising New Research on Early Intervention for Autism

CNN reports that a study confirms that early autism intervention in toddlers is effective. A study was completed with a program called the Early Start Denver Model (ESDM). This program involves about twenty hours a week in the child's own home. It involves play and parents can easily learn some of the skills that can be applied in other settings. The study compared a group of toddlers that were given ESDM intervention to a group of toddlers receiving typical community interventions. Both groups showed improvement, but the ESDM group improved IQ by 18 points compared to 8 points with traditional interventions. The study is reporting that some of the children "virtually caught up to the typical kids their age." However, they are not claiming it is a cure for autism. According to the article they are working on a replication study to determine if there are similar results. Personally, I'm looking forward to the results of the replication study and want to find out more about this method. From what I understand it is less of a time constraint than ABA therapy.

This study also demonstrated the need for early intervention, which also includes early identification. When children are diagnosed early, they can begin receiving interventions that are proven effective. The study showed that current methods are working, but there may be a new program that can be even more effective on the horizon.

I'd love to hear more from my readers if you have any experience with ESDM or more information about it.




autism

Review Article – Within a single lifetime: Recent writings on autism

AHP readers will be interested in a review article now available online from History of the Human Sciences “Within a single lifetime: Recent writings on autism.” Written by Gregory Hollin the piece reviews five recent books on autism.




autism

What it's really like to have autism | Ethan Lisi

"Autism is not a disease; it's just another way of thinking," says Ethan Lisi. Offering a glimpse into the way he experiences the world, Lisi breaks down misleading stereotypes about autism, shares insights into common behaviors like stimming and masking and promotes a more inclusive understanding of the spectrum.




autism

Autism spectrum disorder : what every parent needs to know / Alan I. Rosenblatt, MD, FAAP, Paul S. Carbone, MD, FAAP.

Autism spectrum disorders in children.




autism

burnt out zine ~ how to cope with autistic burnout // autism, asd, aspergers, neurodivergent

2019




autism

Personalized food intervention and therapy for autism spectrum disorder management

9783030304027 (electronic bk.)




autism

Uncharacteristic Task-Evoked Pupillary Responses Implicate Atypical Locus Ceruleus Activity in Autism

Autism spectrum disorder (ASD) is characterized partly by atypical attentional engagement, reflected in exaggerated and variable responses to sensory stimuli. Attentional engagement is known to be regulated by the locus ceruleus (LC). Moderate baseline LC activity globally dampens neural responsivity and is associated with adaptive deployment and narrowing of attention to task-relevant stimuli. In contrast, increased baseline LC activity enhances neural responsivity across cortex and widening of attention to environmental stimuli regardless of their task relevance. Given attentional atypicalities in ASD, this study is the first to evaluate whether, under different attentional task demands, individuals with ASD exhibit a different profile of LC activity compared with typically developing controls. Males and females with ASD and age- and gender-matched controls participated in a one-back letter detection test while task-evoked pupillary responses, an established correlate for LC activity, were recorded. Participants completed this task in two conditions, either in the absence or presence of distractor auditory tones. Compared with controls, individuals with ASD evinced atypical pupillary responses in the presence versus absence of distractors. Notably, this atypical pupillary profile was evident despite the fact that both groups exhibited equivalent task performance. Moreover, between-group differences in pupillary responses were observed specifically in response to task-relevant events, providing confirmation that the group differences most likely were specifically associated with distinctions in LC activity. These findings suggest that individuals with ASD show atypical modulation of LC activity with changes in attentional demands, offering a possible mechanistic and neurobiological account for attentional atypicalities in ASD.

SIGNIFICANCE STATEMENT Individuals with autism spectrum disorder (ASD) exhibit atypical attentional behaviors, including altered sensory responses and atypical fixedness, but the neural mechanism underlying these behaviors remains elusive. One candidate mechanism is atypical locus ceruleus (LC) activity, as the LC plays a critical role in attentional modulation. Specifically, LC activity is involved in regulating the trade-off between environmental exploration and focused attention. This study shows that, under tightly controlled conditions, task-evoked pupil responses, an LC activity proxy, are lower in individuals with ASD than in controls, but only in the presence of task-irrelevant stimuli. This suggests that individuals with ASD evince atypical modulation of LC activity in accordance with changes in attentional demands, offering a mechanistic account for attentional atypicalities in ASD.




autism

MECP2 Duplication Causes Aberrant GABA Pathways, Circuits and Behaviors in Transgenic Monkeys: Neural Mappings to Patients with Autism

MECP2 gain-of-function and loss-of-function in genetically engineered monkeys recapitulates typical phenotypes in patients with autism, yet where MECP2 mutation affects the monkey brain and whether/how it relates to autism pathology remain unknown. Here we report a combination of gene–circuit–behavior analyses including MECP2 coexpression network, locomotive and cognitive behaviors, and EEG and fMRI findings in 5 MECP2 overexpressed monkeys (Macaca fascicularis; 3 females) and 20 wild-type monkeys (Macaca fascicularis; 11 females). Whole-genome expression analysis revealed MECP2 coexpressed genes significantly enriched in GABA-related signaling pathways, whereby reduced β-synchronization within fronto-parieto-occipital networks was associated with abnormal locomotive behaviors. Meanwhile, MECP2-induced hyperconnectivity in prefrontal and cingulate networks accounted for regressive deficits in reversal learning tasks. Furthermore, we stratified a cohort of 49 patients with autism and 72 healthy controls of 1112 subjects using functional connectivity patterns, and identified dysconnectivity profiles similar to those in monkeys. By establishing a circuit-based construct link between genetically defined models and stratified patients, these results pave new avenues to deconstruct clinical heterogeneity and advance accurate diagnosis in psychiatric disorders.

SIGNIFICANCE STATEMENT Autism spectrum disorder (ASD) is a complex disorder with co-occurring symptoms caused by multiple genetic variations and brain circuit abnormalities. To dissect the gene–circuit–behavior causal chain underlying ASD, animal models are established by manipulating causative genes such as MECP2. However, it is unknown whether such models have captured any circuit-level pathology in ASD patients, as demonstrated by human brain imaging studies. Here, we use transgenic macaques to examine the causal effect of MECP2 overexpression on gene coexpression, brain circuits, and behaviors. For the first time, we demonstrate that the circuit abnormalities linked to MECP2 and autism-like traits in the monkeys can be mapped to a homogeneous ASD subgroup, thereby offering a new strategy to deconstruct clinical heterogeneity in ASD.




autism

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

BACKGROUND AND OBJECTIVES:

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.

METHODS:

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.

RESULTS:

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.

CONCLUSIONS:

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.




autism

Weight Management in Primary Care for Children With Autism: Expert Recommendations

Research suggests that the prevalence of obesity in children with autism spectrum disorder (ASD) is higher than in typically developing children. The US Preventive Services Task Force and the American Academy of Pediatrics (AAP) have endorsed screening children for overweight and obesity as part of the standard of care for physicians. However, the pediatric provider community has been inadequately prepared to address this issue in children with ASD. The Healthy Weight Research Network, a national research network of pediatric obesity and autism experts funded by the US Health Resources and Service Administration Maternal and Child Health Bureau, developed recommendations for managing overweight and obesity in children with ASD, which include adaptations to the AAP’s 2007 guidance. These recommendations were developed from extant scientific evidence in children with ASD, and when evidence was unavailable, consensus was established on the basis of clinical experience. It should be noted that these recommendations do not reflect official AAP policy. Many of the AAP recommendations remain appropriate for primary care practitioners to implement with their patients with ASD; however, the significant challenges experienced by this population in both dietary and physical activity domains, as well as the stress experienced by their families, require adaptations and modifications for both preventive and intervention efforts. These recommendations can assist pediatric providers in providing tailored guidance on weight management to children with ASD and their families.




autism

Factors Associated With Seizure Onset in Children With Autism Spectrum Disorder

BACKGROUND AND OBJECTIVES:

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.

METHODS:

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.

RESULTS:

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).

CONCLUSIONS:

Individuals with ASD at risk for seizures exhibited changes in adaptive functioning and behavior.




autism

Agitation in Patients With Autism Spectrum Disorder Admitted to Inpatient Pediatric Medical Units

OBJECTIVES:

Our goals for this study were to characterize the frequency of agitation in patients with autism spectrum disorder (ASD) admitted to an inpatient pediatric medical unit and to identify risk factors associated with agitation.

METHODS:

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.

RESULTS:

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.

CONCLUSIONS:

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.




autism

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

BACKGROUND AND OBJECTIVES:

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.

METHODS:

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.

RESULTS:

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.

CONCLUSIONS:

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.




autism

Patient- and Family-Centered Care in the Emergency Department for Children With Autism

BACKGROUND:

Emergency department (ED) care processes and environments impose unique challenges for children with autism spectrum disorder (ASD). The implementation of patient- and family-centered care (PFCC) emerges as a priority for optimizing ED care. In this article, as part of a larger study, we explore PFCC in the context of ASD. Our aims were to examine how elements of PFCC were experienced and applied relative to ED care for children with ASD.

METHODS:

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.

RESULTS:

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.

CONCLUSIONS:

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.




autism

Mindfulness-Based Stress Reduction for Parents Implementing Early Intervention for Autism: An RCT

BACKGROUND AND OBJECTIVES:

Systems of care emphasize parent-delivered intervention for children with autism spectrum disorder (ASD). Meanwhile, multiple studies document psychological distress within these parents. This pilot longitudinal randomized controlled trial compared the parent-implemented Early Start Denver Model (P-ESDM) to P-ESDM plus mindfulness-based stress reduction (MBSR) for parents. We evaluated changes in parent functioning during active treatment and at follow-up.

METHODS:

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.

RESULTS:

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.

CONCLUSIONS:

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




autism

Parent Perceptions About Communicating With Providers Regarding Early Autism Concerns

BACKGROUND:

Long delays between parents’ initial concerns about their children’s development and a subsequent autism spectrum disorder (ASD) diagnosis are common. Although discussions between parents and providers about early ASD concerns can be difficult, they are critical for initiating early, specialized services. The principles of shared decision-making can facilitate these discussions. This qualitative study was designed to gain insights from parents of young children with ASD about their experiences communicating with primary care providers with the goal of identifying strategies for improving conversations and decision-making regarding the early detection of ASD.

METHODS:

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.

RESULTS:

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.

CONCLUSIONS:

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.




autism

Families Experiences With Family Navigation Services in the Autism Treatment Network

BACKGROUND AND OBJECTIVES:

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.

METHODS:

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.

RESULTS:

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.

CONCLUSIONS:

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.




autism

Screening Tools for Autism Spectrum Disorder in Primary Care: A Systematic Evidence Review

CONTEXT:

Recommendations conflict regarding universal application of formal screening instruments in primary care (PC) and PC-like settings for autism spectrum disorder (ASD).

OBJECTIVES:

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

DATA SOURCES:

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

STUDY SELECTION:

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

DATA EXTRACTION:

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

RESULTS:

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.

LIMITATIONS:

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

CONCLUSIONS:

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




autism

Disparities in Service Use Among Children With Autism: A Systematic Review

CONTEXT:

Research reveals racial, ethnic, and socioeconomic disparities in autism diagnosis; there is limited information on potential disparities related to other dimensions of services.

OBJECTIVE:

We reviewed evidence related to disparities in service use, intervention effectiveness, and quality of care provided to children with autism by race, ethnicity, and/or socioeconomic status.

DATA SOURCES:

Medline, PsychInfo, Educational Resources Informational Clearinghouse, and the Cumulative Index to Nursing and Allied Health Literature were searched by using a combination of Medical Subject Headings terms and keywords related to autism, disparities, treatment, and services.

STUDY SELECTION:

Included studies addressed at least one key question and met eligibility criteria.

DATA EXTRACTION:

Two authors reviewed the titles and abstracts of articles and reviewed the full text of potentially relevant articles. Authors extracted information from articles that were deemed appropriate.

RESULTS:

Treatment disparities exist for access to care, referral frequency, number of service hours, and proportion of unmet service needs. Evidence revealed that racial and ethnic minority groups and children from low-income families have less access to acute care, specialized services, educational services, and community services compared with higher-income and white families. We found no studies in which differences in intervention effectiveness were examined. Several studies revealed disparities such that African American and Hispanic families and those from low-income households reported lower quality of care.

LIMITATIONS:

The body of literature on this topic is small; hence it served as a limitation to this review.

CONCLUSIONS:

The documented disparities in access and quality of care may further identify groups in need of outreach, care coordination, and/or other interventions.




autism

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.




autism

Improving Behavior Challenges and Quality of Life in the Autism Learning Health Network

OBJECTIVES:

To summarize baseline data and lessons learned from the Autism Learning Health Network, designed to improve care and outcomes for children with autism spectrum disorder (ASD). We describe challenging behaviors, co-occurring medical conditions, quality of life (QoL), receipt of recommended health services, and next steps.

METHODS:

A cross-sectional study of children 3 to 12 years old with ASD receiving care at 13 sites. Parent-reported characteristics of children with ASD were collected as outcome measures aligned with our network’s aims of reducing rates of challenging behaviors, improving QoL, and ensuring receipt of recommended health services. Parents completed a survey about behavioral challenges, co-occurring conditions, health services, and the Patient-Reported Outcomes Measurement Information System Global Health Measure and the Aberrant Behavior Checklist to assess QoL and behavior symptoms, respectively.

RESULTS:

Analysis included 530 children. Challenging behaviors were reported by the majority of parents (93%), frequently noting attention-deficit/hyperactivity disorder symptoms, irritability, and anxiety. Mean (SD) scores on the Aberrant Behavior Checklist hyperactivity and irritability subscales were 17.9 (10.5) and 13.5 (9.2), respectively. The Patient-Reported Outcomes Measurement Information System Global Health Measure total score of 23.6 (3.7) was lower than scores reported in a general pediatric population. Most children had received recommended well-child (94%) and dental (85%) care in the past 12 months.

CONCLUSIONS:

This baseline data (1) affirmed the focus on addressing challenging behaviors; (2) prioritized 3 behavior domains, that of attention-deficit/hyperactivity disorder, irritability, and anxiety; and (3) identified targets for reducing severity of behaviors and strategies to improve data collection.




autism

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.




autism

Maternal and Child Health Bureaus Autism Research Program

OBJECTIVES:

To provide an overview and quantitatively demonstrate the reach of the Health Resources and Services Administration’s Maternal and Child Health Bureau autism research program.

METHODS:

We reviewed program reports and internal data from 59 autism research grantees. The US federal Interagency Autism Coordinating Committee’s strategic plan questions were used as a framework to highlight the contributions of the autism research program in advancing the field.

RESULTS:

The autism research program grantees advance research in several ways. Grantees have strengthened the evidence for autism interventions by conducting 89 studies at 79 distinct research sites. A total of 212 708 participants have enrolled in autism research program studies and 361 researchers have contributed to furthering autism research. The program addresses topics that align with the majority of the Interagency Autism Coordinating Committee’s priority topic areas, including advancements in treatments and interventions, services and supports, and identifying risk factors. Grantee products include 387 peer-reviewed publications, 19 tools, and 13 practice guidelines for improving care and intervention practices.

CONCLUSIONS:

The autism research program has contributed to medical advances in research, leveraged innovative training platforms to provide specialized training, and provided access to health services through research-based screening and diagnostic procedures. Autism research program studies have contributed to the development of evidence-based practice guidelines, informed policy guidelines, and quality improvement efforts to bolster advancements in the field. Although disparities still exist, the Health Resources and Services Administration’s Maternal and Child Health Bureau can reduce gaps in screening and diagnosis by targeting interventions to underserved populations including minority and rural communities.




autism

Hope for children with autism

OM Ukraine Odessa invites children with autism and their families to a two-day summer camp.




autism

Closely Spaced Pregnancies Are Associated With Increased Odds of Autism in California Sibling Births

Autism has been associated with pregnancy and birth complications that may indicate a suboptimal prenatal environment. Although the interpregnancy interval (IPI) may affect the prenatal environment, the association between the IPI and risk for autism is not known.

Using full-sibling pairs from a large population, the authors examined the association between autism and IPIs. Second-born children conceived after an IPI of <12 months had more than threefold increased odds of autism relative to those with IPIs of ≥36 months. (Read the full article)




autism

Co-occurring Conditions and Change in Diagnosis in Autism Spectrum Disorders

Mixed prevalence rates of co-occurring psychiatric and neurodevelopmental conditions have been reported in children diagnosed with an autism spectrum disorder (ASD). ASD diagnoses remain fairly stable within a continuum, but some do not meet criteria for an ASD diagnosis years after initial diagnosis.

Co-occurring neurodevelopmental and psychiatric conditions may explain, in part, why the diagnosis of an ASD may change with age. (Read the full article)




autism

Prevalence of Autism Spectrum Disorders in Hispanic and Non-Hispanic White Children

The number of individuals diagnosed with autism spectrum disorders (ASDs) continues to increase in the United States and other developed countries. Most prevalence estimates indicate that ASD is diagnosed less commonly in Hispanic individuals compared with non-Hispanic (NH) white populations.

Prevalence of ASD in Arizona’s population-based cohort is higher than reported previously. Prevalence in the Hispanic population and NH white population increased significantly over time, with a significant decrease in the gap between Hispanic and NH white prevalence. (Read the full article)




autism

Implications of Childhood Autism for Parental Employment and Earnings

Previous research on the cost of childhood autism has been restricted primarily to studying direct costs (money outlays) incurred by publicly and privately funded service systems.

This study estimates the economic impact on the family and examines indirect costs to families in the form of parental labor market productivity losses. (Read the full article)




autism

Six Developmental Trajectories Characterize Children With Autism

Autism is widely considered a heterogeneous disorder in terms of etiology and phenotype. Although autism is usually a lifelong disorder, little is known about the rate or timing of how children develop regarding their communication and social functioning.

Utilizing annual evaluations for a large population of children with autism, we describe the 6 most common trajectories from diagnosis through age 14 years. Trajectories revealed considerable variation, and high socioeconomic status children were more likely to experience rapid improvement. (Read the full article)




autism

Maternal Metabolic Conditions and Risk for Autism and Other Neurodevelopmental Disorders

Diabetes during pregnancy has been associated with general development impairments in offspring; however, associations between autism and maternal diabetes have been inconsistent. Few studies have examined related conditions accompanied by underlying increased insulin resistance and their association with developmental outcomes.

This population-based study in young children provides evidence that maternal metabolic conditions are a risk factor for autism, developmental delay without autistic symptoms, and impairments in several domains of development, particularly expressive language, after adjusting for sociodemographic and other characteristics. (Read the full article)




autism

Pharmacologic Treatment of Repetitive Behaviors in Autism Spectrum Disorders: Evidence of Publication Bias

Although several randomized trials have examined the efficacy of serotonin receptor inhibitors in the treatment of repetitive behaviors, there still remains clinical uncertainty as to whether these agents are effective in treating such behaviors in children and adults with autism spectrum disorders.

The goal of this meta-analysis was to examine randomized trials of serotonin receptor inhibitors for treating repetitive behaviors in autism spectrum disorders. Although a small but significant effect of these agents was observed, this effect is likely due to the selective publication of trial results. (Read the full article)




autism

Postsecondary Education and Employment Among Youth With an Autism Spectrum Disorder

Previous research has identified low rates of employment and postsecondary education for youth with autism, but generalizability has been limited by small samples.

Using national data, the authors of this study found that youth with autism are at high risk for no postsecondary education or employment, especially in the first 2 years after high school. Findings highlight the need for improved transition planning. (Read the full article)




autism

Autism Spectrum Disorder, ADHD, Epilepsy, and Cerebral Palsy in Norwegian Children

Prevalence estimates for neurologic and neurodevelopmental disorders in children vary widely, and there is uncertainty as to what extent the individual disorders overlap. Most previous prevalence studies have been based on survey data and not on specialist-confirmed diagnoses.

This study used nationwide register data to determine the proportions of Norwegian children diagnosed with autism spectrum disorder, attention-deficit/hyperactivity disorder, epilepsy, and cerebral palsy and to study how the disorders overlap. All diagnoses were specialist-confirmed. (Read the full article)




autism

Occurrence and Family Impact of Elopement in Children With Autism Spectrum Disorders

Anecdotal accounts that suggest elopement behavior occurs in children with autism spectrum disorders (ASDs), that injuries and fatalities can result, and that associated family burden and stress are substantial. However, there has been little research characterizing the phenomenon or its frequency.

Nearly half of children with an ASD elope, and more than half of these "go missing." Elopement is associated with autism severity, and is often goal-directed. Addressing elopement behavior is an important aspect of intervention for many individuals with ASDs. (Read the full article)




autism

Trajectories of Autism Severity in Children Using Standardized ADOS Scores

Autism spectrum disorders are characterized by heterogeneous severity. Previous latent variable analyses of longitudinal data have focused on trajectories of related features such as IQ, and not on changes over time in standardized, observational measures of core autism symptoms.

Autism Diagnostic Observation Schedule–calibrated severity scores allow comparisons of observational data from toddlerhood to adolescence. This first report of latent autism severity trajectory classes indicates that most children show stability in core symptom severity over many years; small groups improved or worsened. (Read the full article)




autism

Autism After Infection, Febrile Episodes, and Antibiotic Use During Pregnancy: An Exploratory Study

It has been suggested that maternal immune activation during pregnancy is associated with cardinal behaviors of autism in the offspring. Epidemiologic studies have yielded conflicting results concerning the association between any infection during pregnancy and the development of autism.

This population-based cohort study investigated the association between specific common infectious diseases, febrile episodes, or use of antibiotics during pregnancy by using maternal population-based self-reported data. (Read the full article)




autism

Disparities in Transition Planning for Youth With Autism Spectrum Disorder

Health care transition services assist youth with special health care needs (YSHCN) in transitioning to adult care without gaps in services or health insurance coverage. Less than half of YSHCN receive anticipatory assistance in this transition; receipt of these services for youth with autism spectrum disorder is unknown.

Youth with autism spectrum disorder receive transition services half as often as youth with special health care needs. Quality of health care is associated with increased receipt of health care transition services. Presence of comorbid conditions decreased receipt of transition services. (Read the full article)




autism

Predictors of Phrase and Fluent Speech in Children With Autism and Severe Language Delay

Autism is a disorder that significantly affects language/communication skills, with many children not developing fluent language. The rate of spoken language acquisition after severe language delay and predictors of functional language, beyond comorbid intellectual disability, is less clear.

This study uses the largest sample to date to examine the relationship between key deficits associated with autism and attainment of phrase and/or fluent speech after a severe language delay, providing information to guide therapeutic targets and developmental expectations. (Read the full article)




autism

Large-Scale Use of the Modified Checklist for Autism in Low-Risk Toddlers

Early detection for children with autism leads to better outcomes; early screening is critical. The Modified Checklist for Autism in Toddlers (M-CHAT) is a widely used instrument for early autism screening and is recommended by the American Academy of Pediatrics.

This large study provides empirical support for population screening for autism spectrum disorders and the use of the M-CHAT in primary care settings. This study provides updated results to facilitate use and scoring of the M-CHAT by clinical providers. (Read the full article)




autism

Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism

Racial and ethnic differences exist in age at diagnosis and early access to mental and behavioral health services among children with autism spectrum disorders (ASDs). ASDs are also associated with increased rates of other medical comorbidities that may require specialty care.

Significant racial and ethnic differences in use of specialty care and specialty procedures exist among children with documented ASD. (Read the full article)




autism

Video Game Use in Boys With Autism Spectrum Disorder, ADHD, or Typical Development

Children with autism spectrum disorder (ASD) and those with ADHD are at risk for problematic video game use. However, group differences in media use or in the factors associated with problematic video game use have not been studied.

Boys with ASD and ADHD demonstrated greater problematic video game use than did boys with typical development. Inattention was uniquely associated with problematic use for both groups, and role-playing game genre was associated with problematic use among the ASD group only. (Read the full article)




autism

Pediatrician Identification of Latino Children at Risk for Autism Spectrum Disorder

Latino children are diagnosed with autism spectrum disorders (ASDs) less often and later than white children. Primary care pediatricians (PCPs) may play an important role in early ASD identification for Latinos.

PCPs find it more difficult to assess for ASDs in Latinos with Spanish primary language, view Latino parents as less knowledgeable about ASDs, and experience frequent barriers to ASD diagnosis in Latino patients. Many PCPs do not offer recommended screenings in Spanish. (Read the full article)




autism

Psychotropic Medication Use and Polypharmacy in Children With Autism Spectrum Disorders

Psychotropic use is common and increasing in children with mental disorders but little is known about the long-term patterns of psychotropic use and polypharmacy among commercially insured children with autism spectrum disorders.

Among 33 565 children with autism spectrum disorders, 64% used psychotropic medications and 35% had evidence of polypharmacy. Older children and those who had seizures, attention-deficit disorders, anxiety, bipolar disorder, or depression had increased risk of psychotropic use and polypharmacy. (Read the full article)




autism

Maternal Prenatal Weight Gain and Autism Spectrum Disorders

Previous studies have found links between prepregnancy BMI and/or pregnancy weight gain and autism spectrum disorders (ASD) risk. Several contributing factors to BMI and pregnancy weight gain (ie, prematurity, advanced maternal age, parental education, and parity) overlap with established ASD risk factors.

This study identifies an association between ASD risk and prenatal weight gain, but not prepregnancy BMI, and accounts for important confounding variables excluded in previous analyses. It provides the first within-mother comparison of these factors by including unaffected sibling controls. (Read the full article)




autism

Neurofibromatosis Type 1 and Autism Spectrum Disorder

NF1 is the commonest single-gene neurodevelopmental disorder with known neurobiology and developmental impact on attention and cognition. Its impact on social functioning is described but poorly understood, with no population-based study of autism spectrum disorder (ASD) prevalence in the disorder.

This epidemiological study shows high prevalence of 25% ASD in NF1 not explained by learning difficulties. ASD should be considered during clinical practice with NF1. Further research into NF1 as a single-gene model of ASD is warranted. (Read the full article)




autism

Media Use and Sleep Among Boys With Autism Spectrum Disorder, ADHD, or Typical Development

Children with autism spectrum disorders (ASD) or attention-deficit/hyperactivity disorder (ADHD) are at increased risk for sleep disturbances and excessive media use. However, the relationship between media use and sleep in children with ASD or ADHD has not been studied.

In-room access to screen-based media and video game hours were associated with less sleep among boys with ASD. The relationships between media use and sleep were much more pronounced among boys with ASD than among boys with ADHD or typical development. (Read the full article)




autism

Comorbidity Clusters in Autism Spectrum Disorders: An Electronic Health Record Time-Series Analysis

Individuals with autism spectrum disorders have a higher comorbidity burden than the general pediatric population, including higher rates of seizures, psychiatric illness, and gastrointestinal disorders.

Comorbidities do not occur evenly. Our clustering analysis reveals subgroups characterized by seizure, psychiatric disorders, and complex multisystem disorders including auditory and gastrointestinal disorders. Correlations between seizure, psychiatric disorders, and gastrointestinal disorders are validated on a sample from a second hospital. (Read the full article)




autism

Validation of the Modified Checklist for Autism in Toddlers, Revised With Follow-up (M-CHAT-R/F)

Screening for autism spectrum disorders (ASDs) using the Modified Checklist for Autism in Toddlers (M-CHAT) improves early detection and long-term prognosis of ASD. Reducing the false-positive rate may increase implementation of screening for ASDs.

The Modified Checklist for Autism in Toddlers, Revised with Follow-up (M-CHAT-R/F), simplifies wording of the original M-CHAT. The current validation study indicates that the M-CHAT-R/F improves the ability to detect autism spectrum disorders in toddlers screened during well-child care visits. (Read the full article)




autism

Economic Burden of Childhood Autism Spectrum Disorders

Previous analyses have documented increased health care costs for children with autism spectrum disorders but have not provided comprehensive estimates of the total economic burden.

There are substantial additional costs associated with caring for children with autism spectrum disorders, amounting to >$17 000 per child annually. Costs accrued outside of the health care system account for the majority of the financial burden. (Read the full article)




autism

Parental Obesity and Risk of Autism Spectrum Disorder

Maternal prepregnancy obesity is associated with an increased risk of neurodevelopmental disorders in children, but previous studies have not taken paternal obesity into account. This has precluded differentiation between the effects of intrauterine exposures and potential genetic associations.

Robust associations were demonstrated between paternal obesity and the risk of autistic disorder and Asperger disorder in children. This study is the first to implicate paternal obesity as a risk factor for autism, and replication is warranted. (Read the full article)