The newly released CDC prevalence rate for autism spectrum disorders is now 1/68, with 1/42 boys affected, according to the latest findings (CDC, 2014). The CDC uses the Autism and Developmental Disabilities Monitoring Network (ADDM) to monitor 11 sites across the country on a regular basis, roughly every two years, and reviews the health and educational records of 8-year olds (peak age for diagnostic accuracy) identified in any given study region. The rates have steadily inclined from 1/150 in 2000, to 1/110 in 2004, to 1/88 in 2012, and now 1/68 for the current monitoring year.
A number of factors are likely contributing to this rise in Autism Spectrum Disorders (ASD) cases and include; increased awareness and identification of autism, earlier diagnosis, diagnostic criteria and definitions which have changed over the years, better assessment tools, and likely, some other unknown factor.
While Michigan is not included in the 11 ADDM monitoring sites, it would be interesting to follow our prevalence rates over the past few years and in the upcoming 5-10 years. Currently, Michigan has no existing systematic process for tracking prevalence since medical claim data was not available to provide such information and the state does not maintain an ASD registry to collect autism related data. Our best estimate of 16,000 children is based on school ASD eligibility, which is not diagnostic and in some cases inconsistent with medical/clinical diagnostic findings. Michigan would be especially insightful since we are one of only two states who, within a very short period of time, have mandated both a private autism insurance benefit and a Medicaid therapy benefit for children under age 6 years. Over the past two years, since autism insurance laws were passed, we’ve witnessed an almost tripling of the number of diagnostic and therapy centers across the state. More and more educators, childcare providers, and primary care physicians are screening for autism and directing families into services. In the past, with so few treatment options, little incentive existed to identify, evaluate, and treat young children, other than school services, since a very limited number of families could actually afford the cost of treatment. My prediction is that, if prevalence were tracked here in Michigan, we would see a striking increase from 2012-2013 (when the benefit became available) forward, reflecting the greater awareness, qualified providers, and access to services overall.
To demonstrate this point further, the CDC findings revealed that New Jersey, known for their extensive autism service centers, resources, and ASD educational programming, showed rates of 21.9/1000, compared to 5.7/1,000 in Alabama, a state with far fewer resources, limited accessibility to care, and generally, fewer children being identified.
Each time new data is released to the media, the initial reaction is often one of shock, and for some, a growing concern that the environment or some unknown toxin is responsible. While scientists have not ruled out an environmental risk factor, to date, nothing definitive has been identified. Extensive research is being conducted to better understand the cause of this lifelong disability. However, I think it is important, as professionals and policy makers, to recognize and educate the general public that what the numbers are showing is improved, and broader awareness, identification, and access to services, at least in the 11 monitoring sites cited in the CDC study.
What does this mean for Michigan? First, I commend our Lt. Governor, Brian Calley, and the legislature for taking the first steps towards improved care for our children with autism in Michigan by passing insurance laws in 2012 that will now mean access to critical, evidence based interventions for this population. Governor Snyder also created the Michigan Autism Council in 2012 through Executive Order and the Michigan ASD State Plan was approved and released to the public in March of 2013. These milestones have significantly increased our state’s attention to and improvements in the care we provide for children with ASD.
Unfortunately, we also have a long way to go. We know autism is never cured. Some children will succeed academically, but continue to require some level of assistance in social and behavioral areas. Our teachers need resources and training to support children on the autism spectrum who eventually, end up in regular education classrooms; always the best outcome. While we have made progress in mainstreaming efforts for the K-12 population, our vocation and technical schools, community colleges and universities generally are not set up to welcome and teach young adults with ASD. This is part of a system that leads to 90 percent unemployment and needs to be addressed. We have a significant population of young adults and adults who will not benefit from insurance reform and early intervention. We cannot forget about them.
Our communities need to prepare for this growing number of individuals with autism; first responders, transportation, retail, parks/recs workers, among others. Too many families are isolated in their homes or are forced to avoid public places out of concern for their child’s safety or the social stigma that comes with autism. We have so much to learn from individuals with autism. The unique talents, skills, and gifts that each person brings to our schools, neighborhoods and worksites are still not recognized by most people. My hope is that with increased awareness and access to the services and supports needed to function in our society, we will all take the necessary steps to better understand autism and move beyond awareness to acceptance. Those would be interesting numbers to monitor.
*This article appeared in the May issue of Dome Maganize http://domemagazine.com