Autism Speaks calls for the development of national action plan

Population of people with autism and cost to society continue to skyrocket

Autism Speaks, the world's leading autism science and advocacy organization, today called on the nation's elected and appointed leaders to immediately develop a new, coordinated strategy to take on a national public health emergency - the autism epidemic - in the wake of a new report from the U.S. Centers for Disease Control (CDC) finding that autism is now diagnosed in a staggering 1 in every 88 American children.

Bob Wright, co-founder of Autism Speaks, said, "We have an epidemic on our hands. The costs are staggering and will continue to rise as prevalence continues to increase. We know that early diagnosis and treatment are critical, so it is imperative that the U.S. government steps up its commitment to helping people living with autism today. There is a way to address this. The investment we make now is essential to reducing the immediate and long-term costs of autism to families and society."

Autism Speaks called for the development of a national autism action plan that should include, among other elements:

• Increased funding for basic science uncovering the genetic underpinnings of autism;
• Increased funding for environmental research detecting the causes of autism;
• Accelerated funding and development of effective medicines and treatments;
• Commitment to a strategy where all children with autism from every background are diagnosed no later than18 months of age;
• Commitment to a National Training Corps to recruit more therapists and service providers, as well as specially trained teachers and teacher assistants;
• A strategy to address the growing needs of adults with autism, specifically around continuing education, employment, housing/residential living and community integration.

"Our commitment must meet the challenge," added Wright. "We need the President, the public health agencies and representatives from both sides of the aisle to come together. A national emergency needs a national strategy. Anything less won't be enough."

The CDC report, published in this week's Morbidity and Mortality Weekly Report (MMWR), states that more than 1 percent, or 1 in every 88 children, is diagnosed with autism today, including 1 in 54 boys. This is a 78% percent increase in 6 years (2002-2008) and a 10-fold (1000%) increase in reported prevalence over the last 40 years. The report uses the same methodology that produced the CDC's 2009 prevalence findings of 1 in 110 children with autism.

"We know early diagnosis matters, but early diagnosis without access to treatment means nothing," said Geraldine Dawson, Ph.D., Autism Speaks chief science officer. "A majority of children don't get the treatment and services they need and deserve. We have to address all of this as we move forward."

"The CDC numbers are alarming, yet they don't begin to tell the story of the real families, real individuals struggling every day," said Autism Speaks President Mark Roithmayr. "From fighting to get a diagnosis and secure appropriate educational services and therapies, to trying to manage tremendous financial and emotional burdens or find a satisfying job opportunity, families are engaged in a daily battle against this disorder. We need to marshal the same resources and attention that the government has devoted to other diseases and disorders and finally make this a fair fight."

The total 2011 National Institutes of Health budget was $30.5 billion. Of this, only $169 million - or 0.6% -- was directly focused on autism research.

Earlier this week, Autism Speaks announced preliminary results of new research that estimates autism costs society a staggering $126 billion per year (U.S.) - a number that has more than tripled since 2006. This cost increases to $137B with the new prevalence numbers. The cost of providing care for each person with autism affected by intellectual disability in the U.S. is $2.3 million through his or her lifespan. The lifetime cost of caring for individuals who are not impacted by intellectual disability is $1.4 million. The Autism Speaks-funded research was conducted by researchers Martin Knapp, Ph.D., of the London School of Economics and David Mandell, Sc.D. of the University of Pennsylvania.