Spotlight On: Delay Between First Concern to Accessing Services

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Monitoring, screening, evaluating, and diagnosing children with autism spectrum disorder (ASD) as early as possible is important to make sure children receive the services and support they need to reach their full potential. There are several steps in this process.

Concerns about Development

Most children (85%) identified with ASD had concerns about their development noted in their records by 3 years of age. Parents or caregivers may notice a concern through ongoing tracking of a child’s development (developmental monitoring) and/or developmental screening. A concern about development is a reason to have a comprehensive developmental evaluation.

Receiving a Comprehensive Developmental Evaluation

A comprehensive developmental evaluation is often a key step in getting access to services, including through the school system.

The majority of children with ASD had concerns about their development documented in their records before 3 years of age. However, there was frequently a lag between first concern and first developmental evaluation. This lag may affect when children with ASD can begin to get the services they need. Getting services as early as possible can make a difference in the development of a child with ASD.

Chart showing: Fewer than half 42 percent of children received a developmental evaluation by the 3 years of age. 19 percent of children with ASD received developmental evaluations between 3 and 4 years of age. 39 percent of children with ASD received developmental evaluations after 4 years of age.

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Diagnosis

Pie chart showing 30 percent vs 70 percent

A medical diagnosis can be a key step in getting medical services provided through health insurance.

Of the children who received an ASD diagnosis, the average age of diagnosis was a little under 4 and a half years (4 years and 4 months).

30% of children who met the ADDM Network surveillance case criteria for ASD had not received a formal ASD diagnosis by 8 years of age, potentially limiting the services they receive.

Steps in the Process

Developmental monitoring is important for all children. Caregivers, such as parents, healthcare providers, and early educators, should know developmental milestones—how children grow, move, communicate, interact, learn, and play. This information helps caregivers know what to expect at different ages, get ideas on how to promote positive development, and recognize potential concerns about development as early as possible. Developmental monitoring is an ongoing process, and CDC’s “Learn the Signs. Act Early.” program has tools and information to help at www.cdc.gov/ActEarly.

A developmental screen is a short test using a validated screening tool to tell if a child is learning basic skills, and it can help determine if there might be a delay. The American Academy of Pediatrics recommends screening children for ASD at 18 and 24 months of age.

A comprehensive developmental evaluation is a thorough review of the child’s behavior and development. This evaluation can include clinical observation, parental reports of developmental and health histories, psychological testing, and speech and language assessments. A comprehensive developmental evaluation is often a key step in getting services, including through the school system.

Diagnosis occurs when a developmental pediatrician, a child neurologist, a child psychiatrist, or a child psychologist uses the results of the comprehensive evaluation to determine if a child has ASD. Neurological and genetic testing can rule out other disorders and can check for genetic or neurological problems that sometimes occur along with ASD. A medical diagnosis can be a key step in getting medical services provided through health insurance.

Page last reviewed: August 27, 2019

Content source: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention