Maternal and Child Health Bureau’s Autism Research Program

Maternal and Child Health Bureau’s Autism Research Program

OBJECTIVES: To provide an overview and quantitatively demonstrate the reach of the Health abstract
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.

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

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

abstract 

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.

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Support for Individuals with ASD - Coping with Family and Virtual Interactions During Pandemic

This video was posted on the Autism Research Institute. It is available on YouTube and linked here:

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Parent Perceptions About Communicating With Providers Regarding Early Autism Concerns

 Parent Perceptions AboutCommunicating With Providers Regarding Early Autism Concerns

abstract 

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 decisionmaking 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

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

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

abstract 

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 schoolaged 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.

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

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

CONTEXT: Recommendations conflict regarding universal application of formal screening abstract
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. 

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Families’ Experiences With Family Navigation Services in the Autism Treatment Network

Families’ Experiences With Family Navigation Services in the Autism Treatment Network

abstract 

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

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

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

BACKGROUND: Emergency department (ED) care processes and environments impose unique abstract challenges for children with autism spectrum disorder (ASD). The implementation of patientand 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

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Factors Associated With Seizure Onset in Children With Autism Spectrum Disorder

Factors Associated With Seizure Onset in Children With Autism Spectrum Disorder

BACKGROUND AND OBJECTIVES: Children with autism spectrum disorder (ASD) have a higher abstract 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 6 11.8 vs 19.2 6 11.1; P = .018), and lower physical quality
of life scores on the Pediatric Quality of Life Inventory (60.1 6 24.2 vs 76.0 6 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 (28.38; 95% confidence interval 214.50 to 22.50; 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

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Handle the Autism Spectrum Condition during Coronavirus (COVID-19) Stay at Home Period: Ten Tips for Helping Parents and Caregivers of Young Children

Handle the Autism Spectrum Condition during Coronavirus (COVID-19) Stay at Home Period: Ten Tips for Helping Parents and Caregivers of Young Children

1. Introduction
COVID-19 has become pandemic [1] and many government decrees have declared restrictive
measures in order to prevent its wider spread. For parents and children, staying at home is one of
these measures. In this situation the handling of young children with special needs such as autism
spectrum condition (ASC) could be challenging for families and caregivers. Usually these children
have interventions for several hours a week at home with special therapists or in dedicated hospitals
and institutes. However at the moment, due to contagion containment measures, both the families and
the ASC children are not physically supported by their therapists and they cannot attend the outside
interventions. These measures, necessary for the health of all of us, need to be carefully handled to
avoid an increase in parental stress and an exacerbation of children’s behavioral problems. ASC is
a severe multifactorial disorder characterized by an umbrella of specific peculiarities in the areas of
the social communication, restricted interests, and repetitive behaviours [2]. The incidence of ASC is
worldwide and recent epidemiological data estimated it to be higher than 1/100 [3,4]. The main aim of
this editorial is to give some advice, summarized in 10 tips, to help families to handle children with
ASC during this period.

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