Helping Children Live to the Fullest by Understanding Developmental Disabilities

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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 (DDs) are a group of conditions that can affect a person’s physical, learning, language, or behavioral development. DDs may impact day-to-day functioning and usually last throughout a person’s life. Approximately 1 in 6 children in the United States have a DD. To best support children and their families, CDC is committed to

  • Monitoring the occurrence and characteristics of common DDs in the population.
  • Improving early identification of children with DDs.
  • Funding partners to help children with DDs and their caregivers.
  • Better understanding the health, functioning, and needs of people with DDs as they mature.

Accomplishments

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  • Reported data from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network showing that about 1 in 44 8-year-old children were identified with autism spectrum disorder (ASD) across 11 U.S. communities in 2018.
    • For the first time ever, ADDM data showed no overall racial or ethnic difference in 8-year-old children identified with ASD. However, at several of the ADDM sites, the percentage of Hispanic children identified with ASD was lower than that of White or Black children.
    • Early identification continues to increase, as more 4-year-old children are being evaluated and diagnosed with ASD than in the past.
    • The ADDM Network also began looking at ASD characteristics among 16-year-old children who had been previously identified by ADDM Network sites at age 8 in 2010.
  • Informed public health strategies for young children (ages 3–9 years) with ASD and their families during public health emergencies through feedback from CDC’s Study to Explore Early Development (SEED) COVID-19 Impact Assessment.
    • Survey topics included the impact of COVID-19 on use of health and education services, child development and resilience, and parental mental health.
  • Facilitated timely and complete reporting of hearing loss in children through technical assistance to jurisdictional Early Hearing Detection and Intervention (EHDI) programs. Successfully received complete individual-level datasets on infants born in 2020 from 39 jurisdictions. These data increase understanding of EHDI service provision and delivery to help ensure timely diagnosis and intervention services.
  • Continued to support efforts to learn more about certain disabilities, developmental disorders, and related conditions, including persistent tic disorders and attention-deficit/hyperactivity disorder (ADHD).
    • Published an updated report on mental health among U.S. children. CDC worked with other government agencies, including the Substance Abuse and Mental Health Services Administration, the National Institute of Mental Health, and the Health Resources and Services Administration to update this important report in 2022. First published in 2013, this report marked the first-ever multi-government agency report on mental health among U.S. children.
    • Persistent tic disorders, including Tourette syndrome (TS), affect about 1.4 million people in the United States. Between 2016-2019, 1 out of every 333 U.S. children ages 3-17 years received a TS diagnosis. Most children who are diagnosed with TS (83%) have a co-occurring condition such as ADHD, anxiety disorder, or a learning disability that can further complicate their health and well-being.
    • ADHD diagnosis for children ages 3-17 varies from 6-16% across U.S. states. ADHD treatment and services can also vary across states.
  • Funded and supported work to update and expand the reach of “Learn the Signs. Act Early.”
    • Updated CDC’s Developmental Milestones and parent tips to better support ongoing conversations about children’s development between families and healthcare professionals.
    • Funded and supported Act Early Response to COVID-19 Teams in 41 states and territories to develop, implement, and evaluate work plans to increase parent-engaged developmental monitoring, bolster early identification of developmental disability, and increase resiliency among families with young children during the pandemic.
    • Used findings from the Act Early Response to COVID-19 Teams to fund and support the Coordinated and Integrated Data System for Early Identification.
  • Funded and supported the American Academy of Pediatrics (AAP) to develop and distribute educational materials to healthcare professionals and families to encourage early diagnosis of fragile X syndrome (FXS) so that people with FXS can receive appropriate care and services. Additionally, supported AAP to develop training modules for pediatric healthcare professionals in best practices for FXS diagnosis and treatment.

Looking to the Future

Children with DDs and their families often face personal, social, and financial challenges. NCBDDD and its partners work across many areas to improve early identification of children with DDs; connect these children and their families to medical, developmental, and behavioral  services; and provide tools and resources to help families facing these challenges. NCBDDD is helping to lead efforts to make data more modern and accessible to meet the needs of all populations. These efforts will help to improve our ability to monitor racial/ethnic disparities in identifying ASD and other DDs. NCBDDD’s mission also includes understanding development at each stage of life, from promoting school readiness to the health of teens with ASD, and helping families and children get the support they need.

Notable Scientific Publications