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Calls to Action

CDC update on autism shows gap between early concerns and evaluation

Gap risks delay in intervention for children; Autism Speaks calls for personalized medical care, services and supports across lifespan
March 31, 2016

 

New York, N.Y. (March 31, 2016) – The Centers for Disease Control and Prevention (CDC) today released its newest estimate of autism prevalence among the nation’s children. The report shows that, overall, less than half the children identified with autism (43 percent) had received comprehensive developmental evaluations by age 3. This proved true despite the fact that the vast majority (87 percent) had developmental concerns noted in their medical or educational records before age 3. Currently, autism can be reliably diagnosed by age 2, with earlier diagnosis affording greater opportunities for intervention that supports healthy development and improves function and quality of life.

The new report also found that black and Hispanic children continue to receive developmental evaluations later than white children and continue to be diagnosed with autism at lower rates. In addition, the newest estimate of autism prevalence among the nation’s children remained unchanged, at 1 in 68, from two years ago.

In response to these findings, Autism Speaks calls on legislators, public health agencies, the National Institutes of Health and others to join in urgently advancing programs such as universal autism screening for toddlers and enhanced and expanded early intervention services – as well as the personalized medical care, support and resources needed by the growing numbers of people with autism now reaching adulthood.

“While we continue to focus on increasing access to earlier identification and quality services for all children with autism, it’s vital for us to remember that the 1 in 150 children counted in the first 2007 CDC prevalence report are now adults,” says Autism Speaks President and Chief Executive Officer Angela Geiger. “While some individuals are thriving, many, many others need personalized support and services to reach their full individual potential for the rest of their lives. Autism Speaks is dedicated to providing that support while advancing research that addresses the unmet needs of both children and adults across the autism spectrum.”

Autism Speaks initiatives include: Developing resources for every stage of life; advancing innovative research that will lead to better understanding of autism and personalized treatments; providing grants to local service providers; fostering employment opportunities and diverse housing and residential supports options; and spearheading state and federal advocacy efforts on behalf of people with autism and their families.  

The limitations of indirect monitoring

To estimate autism prevalence, the CDC uses a surveillance system called the Autism and Developmental Disabilities Monitoring (ADDM) Network. ADDM investigators estimate prevalence based on the educational and medical records of 8-year-olds at 11 sites across the country. The focus on 8-year-olds is based on the assumption that most cases of autism are diagnosed by that age.

A major limitation of the ADDM surveillance system is that it may miss children without records of an autism diagnosis or symptoms.

“There’s evidence to suggest that these numbers may still underestimate the true prevalence of autism in the United States,” says epidemiologist Michael Rosanoff, Autism Speaks director of public health research. “We need to understand why we may be missing autism cases in order to ensure that sufficient services are in place to support individuals across the autism spectrum and across the lifespan.”

About Autism

Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by communication difficulties, social and behavioral challenges, and repetitive behaviors.

About Autism Speaks

Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Since its inception, Autism Speaks has committed more than $570 million to its mission, the majority in science and medical research. On the global front, Autism Speaks has established partnerships in more than 70 countries on five continents to foster international research, services and awareness. To learn more about Autism Speaks, please visit AutismSpeaks.org.