Helping Children Live to the Fullest by Understanding Developmental Disabilities
CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) is committed to helping children with developmental disabilities and their families get the support they need to thrive.
Developmental disabilities, such as autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), hearing loss, cerebral palsy, Tourette syndrome, fragile X syndrome, and vision loss, create delays and/or impairments in daily activities that can affect a child’s health and well-being. Approximately 1 in 6 children in the United States have a developmental disability or other developmental delay. To best support children and their families, CDC is committed to
- Improving early identification of developmental disabilities and delays;
- Monitoring the occurrence and characteristics of common developmental disabilities;
- Identifying factors that put children at risk for developmental disabilities and exploring possible causes;
- Improving early identification of developmental disabilities and delays; and
- Providing technical assistance to partners wanting to implement programs to improve the care and quality of life for children with developmental disabilities and their caregivers.
- Reported data for the first time on the prevalence of intellectual disability (ID) among 8-year-old childrenexternal icon in nine communities participating in the Autism and Developmental Disabilities Monitoring (ADDM) Network. CDC estimates that 1.2% (11.8 per 1,000) of children had ID, and 39% of children with ID also had ASD. These findings could be used to help inform strategies to enhance early access to intervention services to improve the quality of life for children with ID.
- Initiated a data visualization project to enhance the use of real-time, patient-level data from the Early Hearing Detection and Intervention (EHDI) This will help CDC improve tracking and inform decision making to facilitate enrollment into early intervention services for children who are deaf or hard of hearing. As part of EHDI’s work to innovate and drive progress, NCBDDD’s Outcomes and Developmental Data Assistance Center for Early Hearing Detection and Intervention (ODDACE) project has successfully onboarded 14 programs across nine states, with continued program recruitment underway. ODDACE is designed to collect and disseminate developmental outcome data among children who are deaf or hard of hearing.
- Funded 43 State and Territorial Act Early COVID-19 Response Teams to support early identification of developmental delays and disabilities and strengthen resiliency among children, families, and communities during the COVID-19 pandemic. Teams identified needs within their communities and developed strategies to address them, which included conducting trainings, developing public service announcements, customizing materials, implementing social media efforts, and establishing new policies.
- Leveraged the Study to Explore Early Development (SEED) infrastructure to collect information on the impact of COVID-19 on services, behaviors, and health of children with ASD, other developmental disabilities or delays, and children from the general population. This study provides data to help inform public health strategies for children (aged 3–9 years) and their families, particularly during public health emergencies.
- Supported the National Resource Center (NRC) at Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) and Tourette Association of America (TAA) to provide evidence-based ADHD and Tourette syndrome education, health promotion and support for families, educators, healthcare providers, and the public. As examples from this year, CHADD/NRC produced three web-based toolkits, “Diagnosis and Treatment of Children and Teens,” “Your Emerging Adult,” and “ADHD & COVID-19 Resources.”external icon TAA created an “Emotional Overload” toolkitpdf iconexternal icon. Both partners hosted multiple, virtual trainings for providers, reaching more than 1,000 providers.
- Developed and disseminated web-based interactive tools, Promoting Emotional Wellbeing and Resilienceexternal icon, supported by the National Academies of Sciences, Engineering, and Medicine. These tools provide engaging learning strategies for children and adolescents to reduce stress and anxiety during the COVID-19 pandemic.
Looking to the Future
NCBDDD and its partners work across systems to improve early identification of children with developmental disabilities and delays, connect these children and their families to medical, developmental, and behavioral intervention services, and provide tools and resources to help families facing these challenges. NCBDDD’s mission also includes understanding optimal development at each stage of life, including promoting school readiness, enhancing comprehensive care for teens with ASD, and helping families and children get the support they need.
Notable Scientific Publications
- Abercrombie J, Pann J, Shin F, et al.Evaluation of the feasibility and perceived value of integrating Learn the Signs. Act Early. developmental monitoring resources in Early Head Start.external icon Early Childhood Educ J. Published online August 16, 2021.
- Barry CM, Robinson L, Kaminski J, et al. Behavioral and socioemotional outcomes of the Legacy for ChildrenTM randomized controlled trial to promote healthy development of children living in poverty, 2 to 6 years postintervention.external icon J Dev Behav Pediatr. Published online May 3, 2021.
- Charania SN, Danielson M, Claussen A, et al. Bullying victimization and perpetration among US children with and without Tourette syndrome.external icon J Dev Behav Pediatr. Published online May 26, 2021.
- Claussen AH, Robinson L, Kaminski J, et al. Factors associated with self-regulation in a nationally representative sample of children ages 3-5 years: United States, 2016.external icon Matern Child Health J. 2021;25(1):27-37.
- Maenner MJ, Graves SJ, Peacock G, et al. Comparison of 2 case definitions for ascertaining the prevalence of autism spectrum disorder among 8-year-old children.external icon Am J Epidemiol. 2021;190(10):2198-2207.
- Meinzen-Derr J, Wiley S, Grove W, et al. Kindergarten readiness in children who are deaf or hard of hearing who received early intervention.external icon Pediatrics. 2020;146(4):e20200557.
- Powell PS, Pazol K, Wiggins L, et al. Health status and health care use among adolescents identified with and without autism in early childhood – four U.S. Sites, 2018-2020.external icon MMWR Morb Mortal Wkly Rep. 2021;70:605-611.
- Wiggins LD, Nadler C, Rosenberg S, et al. Many young children with autism who use psychotropic medication do not receive behavior therapy: a multisite case-control study.external icon J Pediatr. 2021;232:264-271.
- Yoshinaga-Itano C, Mason CA, Wiggin W, et al. Reading proficiency trends following newborn hearing screening implementationexternal icon. Pediatrics. 2021;148(4):e2020048702.
- Zuvekas SH, Grosse SD, Lavelle TA, et al. Healthcare costs of pediatric autism spectrum disorder in the United States, 2003-2015.external icon J Autism Dev Disord. 2021;51(8):2950-2958.