1 in 68: What Do Autism’s Rising Numbers Mean for Our Families?

Friday, March 28, 2014 View Comments

Developmental pediatrician Paul Wang is Autism Speaks senior vice president and head of medical research. We asked Dr. Wang to address how the continued rise in prevalence will affect the autism community.

Read our full coverage of the CDC’s prevalence update here.

Two years ago, the CDC updated its estimate of autism’s prevalence from 1 in 110 to 1 in 88. Now we’re up to 1 in 68. What do these new numbers mean for individuals on the spectrum and their families?

Compared to the last update two years ago, I believe these newest numbers show that we’re getting better at detecting autism spectrum disorder (ASD). That’s good news because diagnosis is the first step to getting the services that can improve a child’s development and function. Unfortunately, our capacity to deliver high-quality, effective therapy is not keeping pace with the number of children – and adults – who need services. We have to redouble our efforts to improve the availability of highly effective and evidence-based treatments and support services.

The CDC report also helps us focus our nation’s attention on the huge number of Americans affected by ASD. With prevalence at these levels, the inadequacy of services will affect our entire country and economy. More than 50,000 children with autism reach adulthood each year. Research tells us that they’re less likely than any other disability group to be employed or pursue postsecondary education. Yet we know that autism brings strengths and talents as well as challenges. We have to ensure that all those on the autism spectrum have the opportunity to become valued and fulfilled members of our society. This just isn’t happening now.

We have to help our children and teens with autism become as capable as possible now, so they’ll need less support in the future. Our researchers, legislators, educators and health insurers have to work together to make this happen.

Will rising prevalence mean longer waits for therapy, specialized medical treatment and other services?
These numbers remind us that we face a dire shortage of autism expertise and resources in our medical and educational systems. Many children and families affected by autism already face long waits for evaluation and treatment. This is unacceptable. Research shows that high-quality early intervention improves both brain and behavioral development – and with them, a child’s long-term outcomes.

Federal law requires that the educational system respond in a timely way to requests for evaluation and services. But we have to do more to ensure that this happens, and to ensure that our school and medical systems have the capacity to meet our children’s needs for behavioral therapies and specialized medical services. We must continue to advocate for health insurance coverage for proven therapies.

How can we increase access to high-quality medical, behavioral and educational services?Federal and state governments and public health agencies must do more. In addition, we need to increase our investment in the research and training that will bring greater autism expertise to our medical and educational systems.

The Autism Speaks Autism Treatment Network (AS-ATN) continues to train doctors on the best approaches for whole-person care of individuals with ASD. Through its role as the federally funded Autism Intervention Research Network for Physical Health, the AS-ATN is also developing and disseminating best-practice guidelines to physicians around the country and the world.

We desperately need more funding for research that can deliver better medicines, behavioral therapies, educational strategies and lifetime supports for children and adults with autism. At the same time, we need to ensure that schools, medical centers and communities have the resources they need to serve and support individuals with ASD.

Importantly, this support can’t end abruptly when our children reach adulthood. We have to advocate for transition-support services beginning in high school, if not before. We likewise need services in our colleges and in our communities to help young adults with autism find a productive and fulfilling place in society. Autism Speaks also supports passage of the ABLE Act, which will allow families to set aside funds to help address these lifelong issues.

How is Autism Speaks prioritizing research funding to address these needs?
Autism Speaks is funding a wide range of research, because the needs of those with autism are diverse. We know that early intervention improves brain development, function and outcomes. So we fund a large number of projects on earlier identification of autism. Other funded research focuses on treatment, language and communication  support services or the use of technology to provide support in daily life as well as improve research.

But Autism Speaks can’t do this alone. We need our national and state governments to invest far more in autism research and services – an investment in line with the number of American families that autism touches.

Concerned about autism prevalence? Join people around the world to Light It Up Blue for autism awareness.

 

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