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

• Monitoring common developmental disabilities;
• Identifying factors that put children at risk for developmental disabilities and exploring possible causes;
• Improving 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.

Accomplishments

• Developed and awarded two cooperative agreements by the Early Hearing Detection and Intervention (EHDI) program to help expand early identification practices, enrollment into early intervention services, and understanding of the factors that impact the developmental outcomes of children who are deaf or hard of hearing. The newly supported—and first of its kind—NCBDDD Outcomes and Developmental Assistance Center for Early Hearing Detection and Intervention (ODDACE) will expand public health capacity to gather, analyze, and use intervention and developmental outcome data of children who are deaf or hard of hearing. In addition, increased collection and analysis of patient-level data will help establish new ways to improve timeliness of EHDI servicesexternal icon, such as average age at screening (in days), diagnosis, and enrollment into early intervention services.
• Reported data from the Autism and Developmental Disabilities Monitoring (ADDM) Network 4-year-old and 8-year-old children with ASD in 6 and 11 communities across the United States, respectively. CDC estimates that about 1 in 54 children have been identified with ASD (or 19 per 1,000 8-year-olds). This year’s addition of data on 4-year-old children will help NCBDDD identify trends in the early identification of ASD.
• Aimed to learn more about public health prevention and intervention strategies to support children’s health and development through NCBDDD’s Project to Learn About Youth-Mental Health (PLAY-MH). Through PLAY-MH, NCBDDD analyzed data on ADHD, tic disorders, and other developmental disabilities in school-aged children.
• Worked with multiple Medicaid-funded states and reviewed Medicaid billing data to examine the quality and consistency of health care among children with intellectual disabilitiesexternal icon, with the goal to increase awareness and identify policy strategies to improve access to health care for priority medical issues in children.
• Expanded the reach of its Learn the Signs. Act Early. (LTSAE) program by increasing the number of Act Early Ambassadors to 60 representatives. With this added support, NCBDDD has increased capacity for early identification of children with ASD and other developmental disabilities, supported COVID-19 response efforts, and strengthened resilience, skills, behaviors, and resources for children, families, and communities.
• Awarded funding to the Research Triangle Institute to provide support to the Fragile X Clinical and Research Consortium for analysis of longitudinal data on individuals with full-mutation fragile X syndrome via the Fragile X Online Registry with Accessible Research Databaseexternal icon.

Notable Scientific Publications

• Bitsko RH, et al. Indicators of social competence and social participation among US children with Tourette syndrome.external icon J Child Neurol. 2020;35(9):612–620.
• Danielson ML, et al. Community-based prevalence of externalizing and internalizing disorders among school-aged children and adolescents in four geographically dispersed school districts in the United Statesexternal icon. Child Psychiatry Hum Dev. 2020 Jul 30.
• Dietz PM, et al. National and state estimates of adults with autism spectrum disorderexternal icon. J Autism Dev Disord. 2020;50(12):4258–4266.
• Do TQN, et al. Fragile X syndrome-associated emergency department visits in the United States, 2006–external icon Am J Intellect Dev Disabil. 2020;125(2):103–108.
• Lindgren S, et al. Disability, hospital care, and cost: utilization of emergency and inpatient care by a cohort of children with intellectual and developmental disabilities.external icon J Pediatr. 2020 Sep 2.
• Maenner MJ, et al. Prevalence of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2016. MMWR Surveill Summ. 2020;69(No. SS-4):1–12.
• Robinson LR, et al. Trends over time and jurisdiction variability in Supplemental Security Income and State Supplementary Payment programs for children with disabilitiesexternal icon. J Public Health Manag Pract. 2020;26(Suppl 2):S45–S53.
• Shaw KA, et al. Early identification of autism spectrum disorder among children aged 4 years—Early Autism and Developmental Disabilities Monitoring Network, six sites, United States, 2016. MMWR Surveill Summ. 2020;69(No. SS-3):1–11.
• Wiggins LD, et al. Disparities in documented diagnoses of autism spectrum disorder based on demographic, individual, and service factors.external icon Autism Res. 2020;13(3):464–473.
• Wiggins LD, et al. Wandering among preschool children with and without autism spectrum disorderexternal icon. J Dev Behav Pediatr. 2020;41(4):251–257.