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"As Autism Soars: No One Is Left Untouched"

April 05, 2012

 

 

“As Autism Soars: No One Is Left Untouched”

A Letter to Our Community
from Autism Speaks Chief Science Officer

 

April 5, 2012

Dear friends,

The CDC’s new estimate of autism prevalence – 1 in 88 children in the United States – demands that we recognize autism as a public health emergency and national priority warranting immediate attention. For perspective, more children are affected by autism in this country than by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.

No one is left untouched by the pervasiveness of this condition with its profound effects on function and quality of life and its tremendous economic burden on families and society at large.

Autism spectrum disorder (ASD) affects brain development and results in repetitive behaviors and difficulties in social interaction and communication. The new numbers represent a dramatic increase over the previous estimate of 1 in 110, which the CDC released in 2009. Yet we have good reason to believe that the 1 in 88 figure is even still an underestimate.

Current CDC surveillance methods rely on records identifying the number of 8 year olds receiving autism-related services. By contrast, a recent study directly screening grade-schoolers in South Korea identified many previously undiagnosed children. Indeed, as many as two-thirds of these children would have been missed by record review alone. This study, funded by Autism Speaks, set the prevalence of autism in South Korean as 1 in 38. Autism Speaks is now collaborating with the CDC to use a similar approach to better estimate U.S. prevalence. (Learn more about this research grant here.)

We hope to understand more about why some children are not diagnosed. We know from past studies, for example, that children from ethnic minority backgrounds are diagnosed at later ages, on average, and require more visits to a doctor before a diagnosis is made. We must address these healthcare disparities.

New estimates of autism’s economic costs are likewise sobering. This month’s Pediatrics journal features a new analysis of autism’s impact on family incomeThe study found that mothers of children with autism earn, on average, 35 percent less than mothers of children with other chronic health conditions. They earn 56 percent less than mothers of children without health limitations. The findings come as no surprise to our community, as mothers often serve as their children’s primary caregivers and advocates. Often, one parent must quit working or drastically cut back hours to provide care.

University of Pennsylvania health-services researcher David Mandell was the senior author of the Pediatrics study. Last week, he and Martin Knapp, of the London School of Economics, presented the results of their broader analysis of autism’s economic burden. More than tripling previous estimates, they set autism’s economic burden at $126 billion annually in the United States, a number expected to rise along with prevalence. In fact, based on the new prevalence estimates of 1 in 88, the annual cost is now calculated to be $137 billion annually. This estimate includes not only the costs of autism services and medical expenditures, but also indirect costs such as lost productivity and income.

Drs. Mandell and Knapp are working to assess the cost savings associated with delivering effective interventions at key life stages. These include intensive behavioral therapy during the preschool years and transition services that help teens and young adults achieve greater independence and employment success. (Both these analyses were supported by an Autism Speaks research grant.)

These dramatic numbers – in prevalence as well as costs – pose important questions for us as a society. First, in the minds of many, is why prevalence continues to rise so dramatically.

Clearly, we are seeing improved detection and reporting. But factors that increase autism risk cannot be ruled out. While it is unlikely that any single risk factor alone is to blame, research has shown that a variety of environmental, or nongenetic, factors influence autism risk – particularly during crucial periods of prenatal and newborn brain development. To identify these risk factors, Autism Speaks is supporting a number of studies looking at environmental risk factors.

Second, are we as a nation equipped to handle the growing need for services and treatment?

Thanks to significant and sustained research, we better understand what services and treatments work best to address needs and improve function among children, adolescents and adults with different subtypes of ASD. However, we need more research to develop more effective strategies for improving the health and quality of life of adults with ASD.

Unfortunately, despite such advances, many families lack access to vital services. The hurdles include community shortages of service providers and absent or inadequate coverage of autism services by health insurance. Ethnic minorities and low-income families appear to be particularly hard hit by inadequate access to services – a treatment gap that Autism Speaks has vowed to address.

Simply put, it’s not enough to develop quality interventions with proven benefits. We must become better at delivering these life-changing services.

This will require that resources be used more efficiently and delivered in innovative ways. Autism Speaks “Move the Needle” initiative has the goal of lowering the age of autism detection and ensuring that all families have access to the kind of early diagnosis and intervention that has been shown to improve children’s outcomes. We are also investing in research that can identify and develop the most effective ways to help teens and young adults make the transition to independence and employment.

We must also ask how we can better support families – many of whom endure job loss and bankruptcy as they strive to provide their children with therapy that can improve outcomes. We can reduce the economic burden on our nation by fostering improved outcomes that lead to greater independence and quality of life in adulthood.

The need for answers demands that autism become a national priority. The Combating Autism Act and its recent reauthorization helped ensure that autism remains in the forefront of public health issues and that financial resources are allocated to address these needs. More resources are needed, however, to address the scale of the crisis that autism has become.

It has now become clear that our society as a whole needs to become engaged in solving this public health emergency. All of us are touched by autism and its economic burden. We need our national and state leaders – and political candidates – to rise to the challenge by making autism one of our top public health priorities. Visit www.autismvotes.org to read more about the advocacy efforts to increase needed resources and develop a national strategy.

Please help us keep the conversation going. As always, we love hearing from you during our monthly “The Doctors Are In” webchats, in the comment section of our science blog and by email at sciencechat@autismspeaks.org.

Warmest regards,  

Geraldine Dawson