May Institute President/CEO weighs in on the importance of early autism diagnosis

Correctly Diagnosing Autism More Important Than Ever

While autism-related data released in October by the journal Pediatrics and the Centers for Disease Control and Prevention were not entirely unanticipated, the increase in the number of children diagnosed with autism spectrum disorders (ASD) is cause for profound concern and renewed action.

The new statistics for the first time place the prevalence rate of ASD at one in 91 children. This further emphasizes the critical need in this country to effectively tackle this public health crisis on multiple fronts – research, information, and treatment.

Many in the scientific community believe that an intensive and ongoing commitment to research is the best place to begin to seek solutions to this national challenge. The Obama administration has proposed a more coordinated national strategy to address the challenges of ASD, including a significant increase in funding for autism research. But research, however critical, is only one piece of the equation.

Families grappling with the complexities of autism often have more questions than answers. Accurate information, particularly at key moments requiring important decisions, can literally change the trajectory of the life of an individual with ASD. What are the early warning signs? How and when do we diagnose a very young child? What treatments are most effective? How do we best support a loved one with ASD across the lifespan? While we have not yet discovered a cause or cure, we do know a tremendous amount about autism. It is imperative that we focus on providing information about ASD to families who need it. And one of the most critical areas involves treatment.

Parents, educators, and service providers are inundated with claims of “new and improved” treatments, most of which have little or no evidence supporting their effectiveness. Without accurate information, significant time, energy, and money may be wasted on “fad” treatments – postponing intensive and early intervention, which holds the most dramatic promise for children striving to reach their potential.

The National Standards Report released in September by the National Autism Center, a Massachusetts-based nonprofit founded by May Institute, offers the most comprehensive information available to date about treatments for individuals with ASD under the age of 22. It identifies a number of treatments that are effective in addressing core symptoms of autism. May Institute is proud to have joined with experts from around the country to complete the National Standards Project. The next goal for the National Autism Center is to broadly disseminate the report so that families and others can use the findings to inform their treatment decisions.

Accurate information about treatment is useless, however, without the availability and affordability of services. Lack of access to essential services has profound and long-term ramifications for children and adults with ASD. Appropriate, research-based services significantly impact the lives of these individuals, in terms of their skills development, personal growth, and ability to live as contributing members of society.

Not only do these treatments offer these individuals the best hope for reaching their maximum potential, but they are cost-effective as well. It is well-documented that effective interventions can significantly reduce long-term costs. According to a Harvard School of Public Health report, applied behavior analysis (one of the “effective treatments” identified by the National Standards Project) has been shown to reduce the percentage of individuals with ASD requiring lifelong care by almost half, and to reduce the costs of lifelong care by two-thirds. While the debate continues about who should bear the costs associated with treating these individuals, it is short-sighted to not factor in the long-term savings. In the meantime, too many individuals are not receiving the care they need today.

Massachusetts has a long history of supporting its most vulnerable citizens. We must continue to work at identifying and diagnosing children on the autism spectrum as early as possible, educating families, and providing effective, evidence-based treatment for every child and adult who needs it. We are very encouraged by the number of legislators who are currently supporting a broad range of legislative bills that tackle many of these issues related to ASD.

Walter P. Christian, Ph.D., ABPP
President and Chief Executive Officer
May Institute