Autism Spectrum Disorder Resources 

Offered by Linda K. Smith, Deputy Assistant Secretary for Early Childhood Development

Administration for Children and Families, U.S. Department of Health and Human Services

Sent to ECD-ACF-OUTREACH@LIST.NIH.GOV, April 14, 2016

Autism Awareness and Acceptance Month

Given that April is Autism Awareness and Acceptance Month, it is an important time to reflect on what we should do to support and nurture the unique strengths of all children. Recently, the Centers for Disease Control and Prevention (CDC) released a new report and summary of key findings that show there are many children living with autism spectrum disorder (ASD) who need services and support, both now and as they grow into adolescence and adulthood. In early childhood, more must be done to ensure that children with ASD are evaluated as soon as possible after developmental concerns are recognized.

ASD is a lifelong developmental disability distinguished by social communication and interaction challenges. Individuals with ASD might repeat specific patterns of behavior, interests, or activities.[1] The severity of symptoms and manner in which these impact the lives of children with ASD vary greatly. Learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Initial signs and symptoms are generally apparent early on in child development; however, some might not be recognized as symptoms of ASD until a child struggles meeting social, educational, occupational, or other important life stage demands.

Based on data from 2012, the CDC estimates that ASD impacts 1 in 68 or 1.5% of U.S. children. Although this information is consistent with data from 2010, it is too early to know if the percentage of U.S. children with ASD is still increasing or has stabilized. However, we do know that children identified with ASD are not receiving comprehensive developmental evaluations¹ as early as they could be. On average, children identified with ASD are not diagnosed until after age 4, even though children can be reliably diagnosed as early as age 2.[2] Black and Hispanic children are even less likely to be identified with ASD. Those that are identified with ASD receive comprehensive developmental evaluations later than white children who are identified with ASD.[3] Research shows that parents of children with ASD have developmental concerns even before their child’s first birthday. While ASD cannot be “cured”, early intervention can make the biggest difference in the lives of children.

What can you do?

Birth to 5: Watch Me Thrive! is a coordinated effort from the Departments of Health and Human Services and Education to encourage developmental and behavioral screening and support for children, families, and the providers who care for them. The initiative seeks to:

• Celebrate milestones. Every family looks forward to seeing a child’s first smile, first step, and first words. Regular screenings with early childhood professionals help raise awareness of a child’s development, making it easier to expect and celebrate developmental milestones.
• Promote universal screening. All of our children need support in the early years to make sure they stay healthy and happy. Just like hearing and vision screenings assure that children can hear and see clearly, developmental and behavioral screenings assure that children are making developmental progress, in areas such as language, social, or motor development. Screening is a regular part of growing up.
• Identify possible delays and concerns early. Screenings can help kids succeed in and beyond their school years. With regular screenings, families, teachers, and other professionals can assure that young children get the services and supports they need, as early as possible to help them thrive alongside their peers.
• Enhance developmental supports. Families are children’s first and most important teachers. Combining the love and knowledge families have of their children with tools, guidance, and tips recommended by experts, can help optimize the developmental support children receive.

Birth to 5: Watch Me Thrive! supports the implementation of these core missions with:

1. A compendium of research-based screening tools

To elevate the importance of quality, standardized tools, we are releasing a compendium of first line screening tools for young children that can serve as a reference for multiple early childhood sectors. Pertinent information includes cost, administration time, quality level, training required, and age range covered.

2. “User’s Guides” for multiple audiences

This package of Guides describes the importance of developmental and behavioral screening, how to talk to parents, where to go for help, and how to select the most appropriate tool for the population served as well as the provider implementing the screen. There is also a Guide for communities to foster early childhood systems that support developmental and behavioral screening, follow up, referral, and closing the loop. The CDC Community Report on Autism may also empower community stakeholders—from public health agencies to healthcare organizations to school systems and beyond—to use the new findings on ASD for action.

3. An electronic package of free resources for follow-up and support

This collection of free resources includes materials, information, and contact information from each partner agency and relevant grantees, that will bring awareness to parents and providers about general early child development, how and where to get help if a concern exists, tips and techniques to help children with disabilities, concerns or delays, and free online training modules on a range of topics. While we are building upon and complementing current federal resources like Learn the Signs, Act Early and Bright Futures, we also have developed additional resources such as a Screening Passport for Families and Everyday Tips for Early Care and Education Providers to Support Child Development. There is also free training available that includes the CDC Watch Me! training for early educators.

Additional Resources

• Experience Matters: A View into the Health and Wellbeing of US Children and Families with Autism Spectrum Disorder: Prepared by the Child and Adolescent Health Measurement Initiative at the Johns Hopkins Bloomberg School of Public Health in partnership with Autism Speaks, this chartbook highlights the experiences of children and families with ASD using findings from several national surveys, including Pathways, the National Survey of Children’s Health, the National Survey of Children with Special Healthcare Needs, and the National Health Interview Survey. It provides rich information for families, family advocates, policymakers, and others on topics such as the ASD diagnosis experience, the impact on the child’s daily life, health care access, insurance coverage, school and social well-being, family well-being and family impact, safety concerns, and much more. 
• Information Memorandum on Developmental and Behavioral Screening: This Information Memorandum supports Lead Agencies administering child care programs under the Child Care and Development Act of 2014 in implementing provisions in the Act related to developmental and behavioral screening in child care and afterschool care programs.

[1] American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.

[2] Lord C, Risi S, DiLavore PS, Shulman C, Thurm A, Pickles A. Autism from 2 to 9 years of age. Arch Gen Psychiatry. 2006 Jun;63(6):694-701.

[3] Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, eleven sites, United States, 2012