Autism Speaks Director for Public Health Research Michael Rosanoff answers questions raised by the CDC’s latest autism surveillance report
Yesterday, the Centers for Disease Control and Prevention (CDC) released its newest estimate of autism prevalence among the nation’s children – with numbers unchanged, at 1 in 68, from two years ago. Based on these results, an estimated 1 to 1.2 million children under the age of 21 have been diagnosed with autism in the United States. (Read the full report here.)
The report also showed that, overall, less than half the children identified with autism (43 percent) had received developmental evaluations by age 3. This proved true despite the fact that the vast majority (87 percent) had developmental concerns noted in their medical or educational records before age 3.
Overall, age of first evaluation was even later for children in minority groups. This worrisome gap suggests that concerns by parents, teachers and other caregivers may not being taken as seriously as they should. What’s more, autism can be reliably diagnosed as early as age 2, with early intervention affording the best opportunity for early intervention to support development and optimize outcomes.
We asked epidemiologist Michael Rosanoff, Autism Speaks director for public health research, to answer some important questions raised by the report – and address what the update means for the autism community. For a quick overview, see the video above - then explore more in our longer Q&A with Mr. Rosanoff below.
What does the report tell us?
Rosanoff: It suggests that autism’s reported prevalence may be leveling off. But as the CDC made clear: “It is too soon to tell.” The CDC will continue tracking to better understand changes over time.
The numbers also suggest that we’ve gotten better at identifying autism in the US. Ten years ago – when the CDC first started autism surveillance, the reported prevalence was 1 in 150. We have reason to believe that much of the increase since then is due to improved detection.
But diagnosis rates among ethnic minority children continue to lag behind – suggesting that they are not getting the attention and services they need.
We have other evidence, as well, that some children autism may remain undiagnosed and, so, without access to services. It’s vital to capture true autism prevalence so that the necessary services and supports can be put in place for those living with the disorder.
What suggests that we’re still missing some kids with autism?
Rosanoff: Certainly, the ethnic disparities in diagnosis rates, mentioned above, suggest that we’re missing minority children. In addition, a recent national phone survey by the CDC found that 1 in 45 school-age children have ever been diagnosed with autism. And a study funded by Autism Speaks found a prevalence of 1 in 38 when South Korean investigators went into schools to directly screen students for autism.
All this suggests that the current CDC surveillance methodology has its limitations and may underreport the actual number of children with autism in the US.
While 1 in 68 is the CDC’s overall estimate for autism prevalence, this report – like previous ones – shows a wide range in prevalence rates between states. Why is that?
Rosanoff: It’s important to remember that the CDC surveillance methods involve analyzing children’s educational and medical records for autism diagnoses or symptoms. The investigators’ access to these records – and the number of records – varies widely between states. We don’t think the variation between states reflect actual differences in autism rates. However, it is further evidence that some states may be missing a significant number of cases.
Going forward, what needs to be done?
Rosanoff: We need to improve service access on two fronts:
First, this study demonstrated the importance of schools in detecting autism, however autism can and should be detected before children reach school age. Among the kids with autism identified in this study, the median age of first evaluation was after age 3 (40 months). But nearly 90 percent of these children had developmental concerns noted in their medical and/or educational records before age 3. There may be barriers to earlier diagnosis – perhaps including inadequate access to services or inefficient procedures for obtaining services – that warrant additional attention.
This is so important because we know that earlier diagnosis and intervention fosters healthy development and optimal outcomes across the lifespan. Bottom line: We need to improve early detection and access to early intervention services.
Second, we need more attention to the reality that autism is a lifelong condition. Those 1 in 150 children identified in the CDC’s first, 2007 autism surveillance report are now adults. And an estimated 50,000 children with autism become adults with autism every year.
Many may be in need of services – including vocational, educational and housing supports – to reach their full potential as valued members of our communities. Those supports are not yet in place at near the level needed by the autism community.
What is Autism Speaks doing to meet these needs?
Rosanoff: We are dedicated to advancing research and providing support that helps both children and adults reach their full potential as valued members of our communities.
We must not forget that the CDC’s surveillance report captures prevalence of school-aged children. We still do not know what prevalence is among adults on the spectrum. We need comprehensive strategies that address the lifelong needs of this growing population.
In addition to lowering the age of diagnosis, we are developing diverse services and supports throughout school years as well as the crucial transition to adulthood with supports in areas such as employment, post-secondary education, housing and residential supports.
Here are just some of these services:
The Autism Speaks Autism Treatment Network, with 14 medical centers across North America, provides comprehensive care for children with autism, while developing and disseminating national guidelines and model programs to address the complex health issues that frequently occur with autism. These include high rates of epilepsy, sleep and GI disorders, and mental health issues such as anxiety and depression.
Adult services, including employment resources such as the Autism Speaks Employment Tool Kit and The Spectrum Careers, an online jobs portal from Autism Speaks and Rangam Consultants that helps those with autism find meaningful employment opportunities; housing resources such as the Autism Speaks Housing and Residential Supports Tool Kit and the HeroX House to Home Prize, offering $150,000 in prizes for belief-busting breakthroughs in housing and residential supports for adults with autism; and adult education resources such as the Autism Speaks Postsecondary Educational Opportunities Guide and the Autism Speaks Brian & Patricia Kelly Postsecondary Scholarship Fund.
Research aimed at improving services and therapies for children and adults across the autism spectrum. The Autism Speaks MSSNG project is building the world’s largest autism genome database to deepen understanding of autism’s many subtypes and advance development of personalized treatments and supports. Explore more than 750 research projects and fellowships using the Autism Speaks grants search engine.
Autism Speaks tool kits for families, adults and autism-care professionals, available for free download from the Autism Speaks website.