Pediatrics journal dedicates supplement publication to autism studiesJuly 21, 2020
The journal of the American Association of Pediatrics published a standalone supplement to its April issue dedicated to findings in autism, based on the work of researchers in the Autism Speaks Autism Treatment Network (ATN), acting as the Autism Intervention Research Network on Physical Health (AIR-P) funded by the federal Health Resources and Services Administration.
The 17 pieces published in the autism supplement to Pediatrics, titled “Improving Health and Health Care for Children and Youth With Autism Spectrum Disorder,” include both provider guidance and new findings based on network-supported research studies.
Some highlights of the research findings include:
93 percent of families of children with autism report challenging behaviors to their providers, including ADHD, anxiety and irritability, leading to lower quality of life.
Only a third of 3- to 5-year-old children are receiving recommended behavior therapies, and few of those are receiving the recommended amount. Psychotropic medications are also being used in this age group.
Certain racial, ethnic and socioeconomic groups experience barriers to getting appropriate autism care and report lower quality of care.
“This collection of findings and guidance speaks to what we do in our network, which is to get better healthcare to all kids and teens with autism,” said Donna Murray, Ph.D., vice president of clinical services at Autism Speaks. “By engaging with families at their point of care at our 12 network sites in North America, we are able focus on researching issues that matter to them and get solutions to them faster.”
Continue reading below for a summary of each of the 17 publications in the journal supplement:
The Autism Treatment Network: Bringing Best Practices to All Children with Autism
The ATN-AIR-P studies health conditions that commonly affect children and adolescents with autism, such as sleep problems and constipation, as well as testing which interventions work to improve these conditions. It has been instrumental in developing clinical guidelines for many of these conditions.
Using data reported by families at their regular medical visits, this network is transitioning to a new learning health network framework. The network strives to accelerate the testing of new treatments and more rapidly get findings to providers to improve clinical care. The network's new structure will also allow for greater reach into communities and diversity in the research population.
Improving Behavior Challenges and Quality of Life in the Autism Learning Health Network
This study found that 93 percent of children with ASD reported challenging behaviors, including attention deficit-hyperactivity disorder (ADHD), irritability and anxiety. These behaviors correlated with a lower quality of life for these children compared with typically developing children.
This understanding gives providers a focus on likely root causes of challenging behaviors that can potentially improve quality of life for children with autism and the overall health and well-being of the family.
Family Engagement in the Autism Treatment and Learning Health Networks
Families are an integral component of the ATN-AIR-P, providing perspective that informs how research is conducted and ensuring that the work is focused on solutions that will have a meaningful benefit to people with autism and their families.
Disparities in Service Use Among Children with Autism: A Systematic Review
Racial and underrepresented groups, including children from low-income families, have less access to certain health care services they need compared to other groups. These include acute care, specialized services, educational services and community services. Some underserved groups also reported lower quality of care. This understanding points to areas where solutions are needed that reduce barriers to getting needed health care.
Screening Tools for Autism Spectrum Disorder in Primary Care: A Systematic Evidence Review
ASD screening tools can be accurately used for children ages 16 to 40 months in primary care, having the potential to diagnose more youth with ASD at an earlier age. These tools for early identification are critical to starting interventions than can have a strong effect on developmental outcomes later in life.
Families’ Experiences with Family Navigation Services in the Autism Treatment Network
This study looks at factors influencing the effect of family navigation services on improving care and access to services for children who have received an autism diagnosis. Variations in how and when family navigation services are offered influences their effectiveness. Researchers offer recommendations on implementing effective family navigation practices across different health care settings.
Parent Perceptions About Communicating with Providers Regarding Early Autism Concerns
This study revealed several promising ways parents found could enhance communication with their child’s health provider, potentially reducing obstacles to getting appropriate autism care. Shared decision-making, provider follow-up on service navigation and provider support on weighing service options are potential provider strategies to ensure follow up on referrals for needed services.
Mindfulness-Based Stress Reduction for Parents Implementing Early Intervention for Autism: An RCT
This clinical trial found that a high-quality and low intensity mindfulness intervention can reduce stress, anxiety and depression for parents and caregivers of children with autism.
Patient- and Family-Centered Care in the Emergency Department for Children with Autism
Parents and caregivers as well as emergency department providers shared strategies that improve care for children with autism when visiting the emergency department. Approaches that led to improved care experiences include consultation with parents, staff understanding of autism and a supportive physical environment that includes space for families and low stimulation. This enables a higher level of trust between service providers and ASD families and reduces barriers to getting needed health care.
Therapy and Psychotropic Medication Use in Young Children with Autism Spectrum Disorder
This study found that only 33 percent of young children (3 to 5 years old) with ASD are receiving behavior therapies – the primary evidence-based treatment for autism. Those that are getting therapies received less than the 25 hours per week recommended, and about 16 percent are on at least one psychotropic medication, most of which are only approved for use in children older than age 6. Certain regions of the U.S., including the Midwest and Southern region, showed higher rates of medication use than the Northeast and West, or in Canada.
Agitation in Patients with Autism Spectrum Disorder Admitted to Inpatient Pediatric Medical Units
Agitation episodes occurred for more than 18 percent of patients with autism included in this study. Nearly one-third of these episodes resulted in use of physical restraints. Agitation was more common among children who had a history of agitation and sensory sensitivities, increasing their hospital stay and decreasing their satisfaction with provider care. These findings suggest that hospitals can improve the inpatient hospitalization experience for patients with autism by screening for a history of agitation and using support services early in the hospital admission process.
Factors Associated with Seizure Onset in Children with Autism Spectrum Disorder
Epilepsy is a common medical condition in people with autism. This study found that children with hyperactivity symptoms, more repetitive behaviors, lower adaptive functioning and lower physical quality of life were more likely to develop seizures, indicating the need for providers to consider these risk factors when treating patients with ASD.
Weight Management in Primary Care for Children with Autism: Expert Recommendations
Overweight and obesity aremore common in children and adults with autism, leading to several related health conditions including diabetes, heart disease and cancer. This study finds that children with ASD have an increased risk for obesity, with an estimated 50 to 90 percent having feeding problems. Researchers suggest that providers screen for weight concerns and refer at-risk children for behavioral therapies and coach families on strategies that promote healthy weight and fitness. Coordination with school officials can also lead to including nutrition and physical activity goals in a child’s Individualized Education Plan (IEP) to ensure consistency across home and school settings.
Service Use Classes Among School-aged Children from the Autism Treatment Network Registry
This study looked at what types of treatments children with autism were likely to be using and how they were linked to the child’s autism severity and other factors. Children with higher autism severity scores were more likely to use a combination of treatments. Children with lower autism severity were more likely to use only a limited number of services. More than 40 percent of children studied were using educational and behavior services, such as behavior therapy, speech therapy and educational support services. Higher income children with low quality of life were most likely to use complementary and alternative medicine services. This understanding can help providers engage families in shared decision making to ensure families are using appropriate services for their children’s individual needs.