In recognition of Autism Awareness Month, Autism Speaks co-hosted a seminar with the Autism Society and Centers for Disease Control (CDC) to reflect on advancements made in understanding Autism Spectrum Disorders (ASDs) since the creation of the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) a decade ago. The seminar, Autism Spectrum Disorder: Understanding an Urgent Public Health Concern, was held in collaboration with the New Jersey Department of Health and Senior Services, and the state’s leading autism research and advocacy organizations at Children’s Specialized Hospital in New Brunswick, NJ.
Designed as a learning experience for partner organizations, the seminar provided a forum to evaluate the progress made in understanding autism during the past decade and future challenges at the community, state and national levels. In addition to representatives from locally based advocacy groups, speakers included Congressmen Frank Pallone, Jr. and Chris Smith, New Jersey Department of Health and Senior Services Commissioner Mary O’Dowd, NCBDDD Director Dr. Coleen Boyle, the Autism Society’s Vice President of Public Policy & General Counsel Jeff Sell, and Peter Bell, Autism Speaks’ Executive Vice President of Programs and Services. Bell provided background on Autism Speaks’ ongoing research and the role science has played in shaping our perception of ASDs. Discussions also covered a variety of issues facing individuals with autism, such as public health approaches to ASDs and ways to make a difference in the lives of families affected by this public health crisis.
Click here to view the slideshow presented ‘Autism Spectrum Disorders: Understanding an Urgent Public Health Concern.’
This post is by Alycia Halladay and Michael Rosanoff, members of the Autism Speaks Science Team.
Twenty years ago, autism affected somewhere around 1 in 2000 children. Today, it affects 1 in 110 children. In other words, autism prevalence has increased dramatically over the past 20 years. In fact, it has increased an estimated 600%. Seems straightforward enough, yet why do we keep hearing the same question…
“But is it a true change in autism prevalence?” That is, how much of the change in autism prevalence is truly due to an increase in autism risk?
In an effort to uncover the answers to this question, Autism Speaks and the CDC co-sponsored a workshop entitled “U.S. Data to Evaluate Changes in the Prevalence of Autism Spectrum Disorders,” held on February 1, 2011 at the CDC Headquarters in Atlanta, GA.
The “Evaluating Change” workshop was designed to bring together stakeholders from the autism community and thought leaders in the fields of autism epidemiology and public health to consider the factors driving the change in autism prevalence over the past two decades. A growing body of epidemiologic research has begun to piece together the prevalence puzzle. Factors such as younger age of diagnosis, broadening of diagnostic criteria, improvements in the availability of services, and better awareness of the disorder have all been attributed to the change in autism prevalence. However, recent epidemiological studies indicated that, while these factors do account for a portion of the change, they cannot account for all of the increase alone (see Figure which was adapted from a presentation by Dr. Peter Bearman at the meeting).
So, where is the rest of the increase coming from? What is causing it? And most importantly, what can be done to identify and quantify the influence of multiple genetic and environmental risk factors, and their interaction, on the change in autism prevalence over time? (For more background, please see “What is Causing the Increase in Autism Prevalence”)
Scientists, advocates, family members, and individuals with autism alike served as expert panelists charged to identify promising directions, scientific priorities, and possible approaches for better understanding ASD prevalence trends in the U.S. The beginning of the workshop focused on existing datasets that have been used to estimate autism prevalence and identify potential environmental risk factors associated with autism diagnosis. These include: the CDC’s Autism Developmental Disability Monitoring Network (ADDM), the California Department of Developmental Services (DDS) system, and Special Education data, as well as data from international health registries such as those from the Scandinavian countries. These surveillance systems, while not designed to study the causes of autism, nonetheless have been helpful in identifying possible risk factors. Not only have these resources provided information about the rising prevalence of autism, but they have also identified and replicated findings relating to parental age, obstetrical complications, certain chemical exposures and even genetic influences.
In addition to presentations on what has been already been done to understand reasons for ASD prevalence changes, examples of approaches to understanding prevalence changes from other health conditions were presented. Scientists from the fields of cancer, Parkinson’s, asthma, and schizophrenia research presented methodologies and models for deciphering prevalence trends in their respective disorders and how these previous efforts may inform autism prevalence research. In all cases it was found that changes in prevalence over time are often the result of a complex relationship between genetic and environmental risk factors, as well as factors related to diagnosis and awareness.
In the afternoon, participants broke out into discussion groups focused on the following topics: 1) How can prevalence information be used by stakeholders including parents, professionals, and policy makers? 2) What more can be done with ADDM data? 3) Where are there other sources of data that can be used for prevalence estimates and 4) What else can be done to understand ASD trends?
As the discussions progressed, a number of overarching themes started to become clear. Risk factors studied in isolation are going to underestimate their true influence. They need to be studied in combination. The influence of these risk factors is unlikely to be simply additive, and sometimes they will overlap. Therefore, the field needs new analytic models that can study a combination of multiple genetic and environmental factors. As Dr. Ezra Susser, from Columbia University said “It is helpful now not to look through the lenses of one side or the other, but rather both, and to use the information for better advocacy and awareness.“
Another participant, Dr. William McMahon from the University of Utah put it this way, “think of this black box of prevalence as a pinball machine. You can’t predict the trajectory of the ball based on just one lever. There are dozens of other factors that influence where that ball is going to go”.
Other recurring themes included the need for data on well-defined autism phenotypes, as well as the importance of data quality and accuracy.
Throughout the meeting public attendees contributed their ideas through thoughtful, careful comments. Stakeholders expressed their ideas and their hopes for the way prevalence data would be used – these included lingering and existing concerns about different environmental exposures, need for facilities for adults, societal treatment and acceptance, and reasons for differences in developmental patterns.
As understanding autism prevalence can help us identify priorities in research, services, outreach, and advocacy, the outcomes of this meeting will be published in a meeting report to inform future strategic planning. This workshop was only a first step in better understanding the changes in autism prevalence over time and characterizing the potentially responsible risk factors. Ultimately, as risk factors related to increased autism prevalence are uncovered and if those risk factors are modifiable, then researchers will have new targets for better treatments and prevention measures. The bottom line is that the dramatic increase in the prevalence of autism calls for urgent action to understand why the increase in occurring. It also underscores the crucial need for more and improved services to address the needs of people with autism spectrum disorders and their families.
Autism Speaks and the Centers for Disease Control and Prevention (CDC) are co-hosting a workshop that will investigate the changes in autism prevalence over time in the United States. Public Registration is Now Open.
Autism Speaks and the Centers for Disease Control and Prevention (CDC) are co-sponsoring a workshop to investigate the changes in autism prevalence over time in the United States. The CDC currently estimates that 1 in 110 children (or approximately 1%) in the United States has an autism spectrum disorder (ASD). This represents a 57% increase in ASD prevalence since the previous estimate just two years earlier. Research over the last two decades has shown a stunning 600% rise in reported ASD prevalence over that time period and while new research is begging to uncover the reasons for this dramatic increase, many questions still remain. (For more background, please see “What is Causing the Increase in Autism Prevalence”)
The purpose of this workshop is to identify promising directions, priorities, and needs for better understanding ASD prevalence trends. The workshop will include presentations on what has been done to understand reasons for ASD prevalence changes, examples of understanding prevalence change from other conditions, and panel breakout sessions to allow for further discussions.
This meeting is open to the public with pre-registration required by January 24, 2011 for US citizens and January 13 for non-US citizens. The workshop itself will be held on February 1, 2011. You may find additional information below:
Date: February 1, 2011
Time: 8:00 a.m. – 5:30 p.m.
Location: Centers for Disease Control and Prevention
1600 Clifton Road NE
Atlanta, GA 30333
Tom Harkin Global Communication Center
PLEASE NOTE: In person attendance for the workshop is limited to 180 people due to room capacity. Registration will close when capacity is reached. However, the public will be able to watch/listen to the workshop via webinar/phone, and registration for virtual attendance will remain open.
To attend in person, please visit:
To attend via Webinar, please visit:
Autism Speaks EVP of Programs and Services Peter Bell, spoke at NY State Sen. Gillibrand’s press conference on Wednesday, July 7, to support NY State insurance legislation. Below is an excerpt from his speech.
When the CDC released the new rates of autism in the U.S. last December, I remember staring at my computer in disbelief for what seemed like an eternity. My “autism life,” which dates back to 1996 when my now 17 year-old son was diagnosed, flashed before my eyes. All I could see were numbers
1990 1 in 2,000
2000 1 in 500
2004 1 in 166
2007 1 in 150
2010 1 in 110
After gathering my composure, I opened a spreadsheet on my computer and did a few more calculations:
- Using the new autism prevalence of 1 in 110 children, I calculated that among the estimated 4 million births in the U.S. each year, approximately 36,500 children will eventually develop an autism spectrum disorder.
- Since there are 525,600 minutes per year (365 x 24 x60), that means that a child is diagnosed less than every 15 minutes (14.45 minutes to be exact).
- Today alone, roughly 110 families will hear the words “your child has autism.” 70 of those children will be boys.
As devastating as this sounds, the news gets even worse. When a child is first diagnosed, doctors often struggle to tell the parents what they should do. Years ago, many parents were told there wasn’t anything they could do. Autism was not treatable. Fortunately, we know this is NO LONGER true. Autism IS treatable, especially when diagnosed early.
Another reason why doctors are reticent to suggest or prescribe a treatment regimen for autism is because they know these treatments aren’t always available due to limited access. That’s because historically insurance providers have rarely covered the cost of autism treatment. For years, families have endured marketplace discrimination when it comes to getting the cost of medical treatment for their children’s autism covered even though most of them have health insurance.
This is one of the biggest reasons why autism ends up being such a financial hardship on most families. Families are mortgaging everything including their futures to help their children get better. Autism Speaks recently learned about a family in Florida that is considering giving up custody of their child with autism simply because they can no longer afford to provide the treatment their son with autism needs.
But the tide is changing. Prior to 2007, only Indiana had an autism insurance law that required health plans to provide coverage for evidence-based medically necessary treatments. Since then, 20 more states have enacted laws. New Hampshire and New York are on the verge of joining this elite group of states who have decided to take a stand in support of enhancing the futures of their families living with autism. We urge Governor Paterson to swiftly sign the New York bill so insurance coverage of autism treatments can become a reality for the families of New York and allow the children with autism of this great state to reach their potential.
But states insurance laws are not enough. Many health plans are exempted from state regulations. These self-funded plans, or ERISA policies, are subject to federal laws and thus far we do not have federal health care reform that requires these plans to provide such coverage for autism treatments.
A key provision in the recently enacted “Patient Protection and Affordable Care Act”, or what most of us call health care reform, does require autism behavioral health treatments to be included as an essential health benefit, but this rule applies only to plans offered in the new health insurance exchanges and certain plans offered in the individual and small group markets outside the exchanges. Autism insurance reform is still desperately needed for other plans, including self-funded plans.
On behalf of the million plus families in America who are doing their best to help their children live with autism, we thank you Senator Gillibrand for your strong commitment to bring autism insurance reform to the autism community.
To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our second item, Autism “Costs” Society, is from Autism Speaks’ Top 10 Autism Research Events of 2007.
Researchers in 2007 made several strides in forcing the community-at-large to face the magnitude of managing the disorder. The Centers for Disease Control and Prevention (CDC) released the first nationwide prevalence survey and the first state-wide epidemiological record- based surveys using standardized approaches, making the whole country shockingly aware that 1:150 children in America has an autism diagnosis. These studies confirmed that autism can no longer be thought of as a disorder that touches only a few people.
The suffering this causes is not easy to comprehend nor to quantify. Nonetheless, a Harvard economist managed to calculate that each year autism costs society a staggering $35 billion, and that it costs more than $3 million to care for an individual with autism over their lifetime due to their special needs. Surprisingly, adult care, not child care or early intervention and treatment, accounts for most of the costs.
As families continue to struggle to gain insurance coverage, documentation of the severity of this financial burden across the lifespan will go a long way to making our voices heard, informing policy-makers, and assisting families in planning for their future. Because of data such as this, insurance reform bills are now under way or under development in 14 states.
Update since this story was first run: Through Autism Speaks’ efforts, fifteen states – Arizona, Colorado, Connecticut, Florida, Illinois, Indiana, Louisiana, Montana, Nevada, New Jersey, New Mexico, Pennsylvania, South Carolina, Texas, and Wisconsin – have enacted autism insurance reform laws. Several other state legislatures are considering measures in 2010 to end the discrimination people with autism and their families have long endured. Visit AutismVotes.org to find out about action being taken in your state.
This part 2 of a 2 part series is from Michael Rosanoff and Andy Shih, Ph.D. who both work in the Autism Speaks science department. This second post is from Andy Shih. Both guest bloggers bios are below the post.
The release of the latest prevalence data by the CDC last week was important in two ways. One, of course, is its implication for the role of environmental risk factors in autism. The other is how the finding enhances awareness and supports our call for more money for research.
The same can be said for our international epidemiology efforts. As part of our Global Autism Public Health initiative (GAPH), we have been funding and planning prevalence studies with our international partners and colleagues for the past several years. In South Korea, for instance, we are expecting the publication of the first ever prevalence estimate in early 2010. We also have prevalence studies in various stages of development in Albania, India, Ireland and Mexico. All these efforts involve members of our International Autism Epidemiology Network.
In addition to the contributions these studies can make to our understanding of autism, they will also help raise awareness and inform policy development in parts of the world where affected individuals and families struggle with severe stigma, and in many instances, little or no support and care. Another way to look at it is that when you conduct a prevalence study, you are basically asking members of the autism community to stand up and be counted. When that happens, especially if the number is anywhere close to the 1 percent figure we have here in the States, their plight and needs can no longer be ignored.
Andy Shih, Ph.D. is the Vice President of Scientific Affairs at Autism Speaks, where he oversees the etiology portfolio, which includes research in genetics, environmental sciences, and epidemiology. He was responsible for the formation and development of Autism Speaks sponsored international autism research collaborations, the Autism Genome Project and the Baby Siblings Research Consortium. Andy also leads Autism Speaks’ international scientific development efforts, such as the Global Autism Public Health Initiative (GAPH). Andy joined the National Alliance for Autism Research (NAAR) in 2002.
Prior to joining NAAR, Andy had served as an industry consultant and was a member of the faculty at Yeshiva University and New York University Medical Center. He earned his Ph.D. in cellular and molecular biology from New York University Medical Center.
Andy’s research background includes published studies in gene identification and characterization, virus-cell interaction, and cell-cycle regulation. He was instrumental in the cloning of a family of small GTPases involved in cell-cycle control and nuclear transport, and holds three patents on nucleic acids-based diagnostics and therapeutics. Andy is a resident of Queens, where he lives with his wife, daughter and son.
Michael Rosanoff, MPH, is a member of Autism Speaks etiology team and manages the organization’s epidemiology and public heath research grants. Since joining the organization in 2007, Michael has been the staff lead in overseeing the International Autism Epidemiology Network (IAEN) and is part of the development team for the Global Autism Public Health Initiative (GAPH). He is also a member of Autism Speaks Grants Division, helping oversee the administration of the organization’s grant-making process for research.
Prior to joining Autism Speaks, Michael conducted independent research at the Gertrude H. Sergievsky Center, a clinical, epidemiological and genetic research center at Columbia University Medical Center focused on developmental disorders of the nervous system. His research background is in genetic and psychiatric epidemiology as well as behavioral neuroscience and neuroimmunology, with publications in the fields of epilepsy and depression. Michael earned his Master of Public Health (MPH) in epidemiology from Columbia University’s Mailman School of Public Health and resides in N.J.