Autism and Developmental Disabilities Monitoring Network -2012 National Center on Birth Defects and Developmental Disabilities Division of Birth Defects and Developmental Disabilities Community Report From the Autism and Developmental Disabilities Monitoring (ADDM) Network Prevalence of Autism Spectrum Disorders (ASDs) Among Multiple Areas of the United States in 2008 Funded by the Centers for Disease Control and Prevention (CDC), U.S. Department of Health and Human Services This community report summarizes the main ndings from the following published report: Centers for Disease Control and Prevention (CDC). Preva- lence of Autism Spectrum Disorders–Autism and Developmental Disabilities Monitoring Network, United States, 2008. Morbidity and Mortal Weekly Report (MMWR) 2012; Vol. 61(3). To read the MMWR report in its entirety, go to www.cdc.gov/mmwr. To read more about autism, go to CDC’s autism site at www.cdc.gov/autism. The ndings and conclusions in this report are those of the authors and do not necessarily represent the ofcial position of the Centers for Disease Control and Prevention. TABLE OF CONTENTS Executive summary 1 What are autism spectrum disorders? 2 Why do we need to know how many people have ASDs ? 3 What is the ADDM network? 4 Results 6 State by state 8 How can the data be used? 37 Questions and answers 38 What else do I need to know? 39 Where can I get more information? 40 1 EXECUTIVE SUMMARY The Centers for Disease Control and Prevention (CDC) estimates that about 1 in 88 children has been identied with an autism spectrum disorder (ASD). CDC’s estimate comes from the Autism and Developmental Disabilities Monitoring (ADDM) Network, which monitors the number of 8-year-old children with ASDs living in diverse communities throughout the United States. In 2007, CDC’s ADDM Network rst reported that about 1 in 150 children had an ASD (based on children who were 8 years old in 2002). Then, in 2009, the ADDM Network reported that 1 in 110 children had an ASD (based on children who were 8 years old in 2006). Most recently, the ADDM Network reported that 1 in 88 children had an ASD (based on children who were 8 years old in 2008). This means that the estimated prevalence of ASDs increased 23% during 2006 to 2008 and 78% during 2002 to 2008 (1–4). At CDC, we understand that people may be concerned when they hear these study results and we have been working to understand what’s causing the increase. We know that some of the increase is probably due to the way children are identied and served in local communities, although exactly how much is due to these factors is unknown To understand more, we need to keep accelerating our research. We recognize that people need answers now, and we hope these updated prevalence estimates will help communities to plan better for the supports and services that families need. We are working, together with our partners, on the search for risk factors and causes and to address the growing needs of individuals, families, and communities affected by ASDs. Here are the key findings from this report: • More children were diagnosed at earlier ages—a growing number of them by 3 years of age. Still, most children were not diagnosed until after they were 4 years of age. On average, diagnosis was a bit earlier for children with autistic disorder (4 years) than for children with the more broadly dened autism spectrum diagnoses or pervasive developmental disorder- not otherwise specied (4 years, 5 months), and diagnosis was much later for children with Asperger disorder (6 years, 3 months). • As has been detailed in previous reports, we also found that almost ve times as many boys were being identied with ASDs as girls (1 in 54 compared to 1 in 252). Research exploring why there are differences in the identied prevalence among males and females is ongoing and knowing that the conditions are more common among boys can help direct our search for causes. • The largest increases over time were among Hispanic and Black children. We suspect that some of this was due to better screening and diagnosis. However, this nding explains only part of the increase over time, as more children were identied in all racial and ethnic groups. • The majority (62%) of children the ADDM Network identied as having ASDs did not have intellectual disability. The largest increases during 2002 to 2008 were among children without intellectual disability (those having IQ scores higher than 70), although there were increases in the identied prevalence of ASDs at all levels of intellectual ability. The ADDM Network prevalence reports help us understand the characteristics of children with ASDs and shed light on the very real impact of the conditions on families and communities living in several communities in the United States. While many studies of ASDs have focused on small groups of individuals, the ADDM Network monitors these conditions among thousands of children from diverse communities across the country. This ongoing, population-based approach allows the ADDM Network to monitor changes in the identication of ASDs and better describe the characteristics of children with these conditions, such as the average age of diagnosis and disparities in identication. These data help direct our research into potential risk factors and can help communities direct their outreach efforts to those who need it most. In summary: We are nding that more children than ever before are being diagnosed with ASDs and they are not being diagnosed as early as they could be. The emotional and nancial tolls on families and communities are staggering and therapies can cost thousands of dollars. We recognize that families are frustrated and want answers now. We will continue working to provide essential data on ASDs, to understand the recent increase and why some children are more likely to be identied than others, and to improve early identication in hopes that all children have the opportunity to thrive 2 WHAT ARE AUTISM SPECTRUM DISORDERS? Autism spectrum disorders (ASDs) are a group of developmental disabilities that often are diagnosed during early childhood and can cause signicant social, communication, and behavioral challenges over a lifetime. People with ASDs have a different way of understanding and reacting to people and events in their world. These differences are caused by the way their brain processes information. This group of developmental disabilities is considered a “spectrum” of disorders. This means ASDs affect each person in different ways, and symptoms can range from mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction, problems with communication, and highly focused interests or repetitive activities. But, there are differences in when the symptoms begin or are rst noticed and in how the symptoms affect a person’s functioning. There are three main subtypes of autism spectrum disorders • Autistic disorder • Asperger disorder • Pervasive developmental disorder-not otherwise specied (PDD-NOS) Diagnosis At this time, there is no medical test, such as a blood test or brain scan, to diagnose ASDs. Instead, they are diagnosed by qualied professionals who conduct comprehensive psychological and behavioral evaluations. These evaluations can include clinical observation, parental reports of developmental and health histories, psychological testing, speech and language assessments, and possibly the use of one or more questionnaires developed specically for people with ASDs. Also, neurologic and genetic testing can be used to rule out other disorders. A person with an ASD might: • Not respond to his or her name by 12 months of age (e.g., appear to not hear). • Not point at objects to show interest by 14 months of age (e.g., not point at an airplane ying over). • Not play “pretend” games by 18 months of age (e.g., pretend to “feed” a doll). • Avoid eye contact and want to be alone. • Have trouble understanding other people’s feelings or talking about his or her own feelings. • Have delayed speech and language skills (e.g., use words much later than siblings or peers). • Repeat words or phrases over and over. • Give unrelated answers to questions. • Get upset by minor changes in routine (e.g., getting a new toothbrush). • Have obsessive interests (e.g., get “stuck” on ideas). • Flap his or her hands, rock his or her body, or spin in circles. • Have unusual reactions to the way things sound, smell, taste, look, or feel. “The Autism Society relies on CDC data to determine how to direct its efforts to serve all individuals affected by autism.” – Jim Ball, Autism Society Board Chairman 3 WHY DO WE NEED TO KNOW HOW MANY CHILDREN HAVE ASDS? We need to know how many children have ASDs, so that realistic plans can be made to support these children and their families. Some of the resources that are needed include therapies, trained teachers, diagnosticians, health care providers, and related service professionals. Understanding the characteristics and number of children who have ASDs is key to promoting awareness of the condition, helping educators and providers to plan and coordinate service delivery, and identifying important clues for further research. Preparing Communities If communities and service systems are not prepared to meet the needs of people with ASDs, it takes a toll on families. Families living with ASDs have unique stresses(5). Therapies are expensive and families spend time on long waiting lists. Many parents even report having to stop work to care for their child with an ASD(6). Annual medical expenditures per child with an ASD range from $2,100 to $11,200. Additionally, we know that intensive behavioral interventions for a child with an ASD can cost from $40,000 to $60,000 per year and that the nonmedical costs of special education for a child with an ASD are about $13,000 per year(7). Eventually the cost to individual families extends into lost productivity and other nancial problems for communities. What Is Prevalence? Prevalence is a scientic term describing the number of individuals with a disease or condition among a dened group of people at a specic period in time. For example, we estimated the prevalence of ASDs among 8-year-olds in 2008 in Atlanta, Georgia, by counting all of the 8-year-olds in Atlanta who were identied with ASDs, and then dividing that number by the total number of 8-year-olds living in Atlanta during 2008. By monitoring ASDs in the same way over time, we can nd out whether more, fewer, or the same number of children are being identied with ASDs. Estimating the prevalence of ASDs at any given time is not simple. Prior to the ADDM Network, the United States did not have a system to track ASDs in multiple communities. Some challenges we still face are: 1. The change to a broader, more inclusive, denition of ASDs(8, 9). This means more people could be classied as having ASDs over time. 2. There is no medical test for ASDs. Diagnosis of ASDs depends on observations of behavior and development. Number of 8-year-olds with ASDs Total number of 8-year-olds PREVALENCE “We have used the ADDM data to raise public awareness of autism by 43 percent through our Ad Council campaign and other efforts. And, these data are also very useful in guiding some of our research funding decisions.” – Mark Roithmayr, President, Autism Speaks 4 Researchers have used different ways to estimate the prevalence of ASDs and each method has advantages and disadvantages. Method What Is It? Advantages and Disadvantages Population Screening and Evaluation Screening and evaluating a sample of all children in a population Can provide high accuracy, BUT can be costly and time-consuming, and might reect a bias based on who participates. Registries Voluntarily including oneself (or one’s child) on a list of people with ASDs Relatively low cost, BUT time consuming and includes only individuals with a clear diagnosis and families who know about the registry and are willing to be on the list. Administrative Data Looking at service records from Medicare and agencies like the U.S. Department of Education Relatively low cost, BUT underestimates prevalence because not all children with ASDs are receiving services for their conditions. Systematic Record Review (ADDM Network Method) Reviewing health and educational records to identify children with autism behaviors Cost-effectively provides estimate of the prevalence of ASDs from large communities and identies children who might not have a clear ASD diagnosis already; BUT, it relies on the quality and quantity of information in records. WHAT IS THE ADDM NETWORK? The Autism and Developmental Disabilities Monitoring (ADDM) Network is a group of programs funded by CDC to determine the number of people with ASDs in multiple communities in the United States. The ADDM Network sites all collect data using the same methods, which are modeled after CDC’s Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP). • Authorized by the Children’s Health Act of 2000, the ADDM Network has been funded by CDC at 14 sites since 2000. Sites are selected through a competitive award process and are not intended to form a nationally representative sample. • The sites represented in this report include areas of Alabama, Arizona, Arkansas, Colorado, Florida, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, and Wisconsin. The ADDM Network’s goals are to: • Provide data about prevalence (how common ASDs are in a specic place and time period). • Describe the population of children with ASDs. • Compare the identied prevalence of ASDs among different groups of children in different areas of the country. • Identify changes in the identied prevalence of ASDs over time. • Understand the impact of ASDs and related conditions in U.S. communities 5 What Is the ADDM Network’s Method? The ADDM Network’s method is population-based, which means that researchers study these conditions among thousands of children from diverse communities across the country. • The ADDM Network estimates the number of people with ASDs by reviewing records at multiple sources that educate, diagnose, treat, and provide services to children with developmental disabilities to ensure as complete a count as possible of children with ASDs. • A panel of clinicians with expertise in identifying and assessing ASDs systematically reviews developmental assessment information from the records using the Diagnostic and Statistical Manual of Mental Disorders, Fourth Revision, Text Revision (10) denition of ASDs and determines whether the identied children meet the requirements of the monitoring program and could be considered as having ASDs. • Record review does not rely solely on the presence of an ASD diagnosis, but also includes review of records for children who have behaviors consistent with ASDs, even if they do not have a diagnosis. What Are the Advantages of This Method? Although the ADDM Network sites do not make up a nationally representative sample, their combined surveillance areas represent approximately 8% of the 8-year-old population residing in the United States and provide the most complete estimate of the prevalence of ASDs in the United States. While the prevalence of ASDs might be higher or lower in different places, combined results from the ADDM Network are similar to those of other U.S. studies (11). This ongoing, population-based approach allows the ADDM Network to monitor changes in the identied prevalence of ASDs and better describe the characteristics of children with these conditions. What Else Is the ADDM Network Doing? The ADDM Network continues to collect data to produce ASD prevalence estimates every 2 years. Ongoing monitoring of the identied prevalence of ASDs is essential to our understanding of the conditions. Currently, the ADDM Network is collecting information on children who were 8 years old in 2010, and for the rst time also is monitoring ASDs among 4-year-olds. In addition to prevalence reports, the ADDM Network has published many ndings on potential risk factors for ASDs and characteristics of individuals identied with ASDs. Some ADDM Network sites also study the prevalence of other developmental disabilities, including cerebral palsy, intellectual disability, hearing loss, and vision impairment. A list of publications can be found on our website at: http://www.cdc.gov/ncbddd/autism/addm-articles.html. CDC Surveillance Year 2008 Sites Autism and Developmental Disabilities Monitoring (ADDM) Network Sites [...]... ADDM Network in 2008 20 Maryland Maryland The Maryland Autism and Developmental Disabilities Monitoring Project (MD-ADDM) The Maryland Autism and Developmental Disabilities Monitoring (MD-ADDM) Project is a multisource investigation to determine and monitor the number of 8-year-old children in the population with ASDs This surveillance system provides an accurate count of the number of children and. .. - County in the ADDM Network in 2008 Dark purple - Adams, Broomfield, Boulder, Dever, Douglas, and Jefferson counties were also a part of the ADDM Network for 2008 See full ADDM Network MMWR report for information from these counties 14 Colorado Colorado Colorado Autism and Developmental Disabilities Monitoring Program (CO-ADDM) The Colorado Autism and Developmental Disabilities Monitoring (CO-ADDM)... Asian or Pacific Islander: 3.7% Asperger Disorder: 6 years, 7 months Yellow - Counties in the ADDM Network in 2008 26 North Carolina North Carolina The North Carolina Center for Autism and Developmental Disabilities Monitoring Project (NC – ADDM) The North Carolina Center for Autism and Developmental Disabilities Monitoring (NC-ADDM) Project is a multisource investigation to determine and monitor the number... Counties in the ADDM Network in 2008 30 South Carolina South Carolina The South Carolina Autism and Developmental Disabilities Monitoring Program (SC-ADDM) The South Carolina Autism and Developmental Disabilities Monitoring Program (SC-ADDM) is a multisource public health surveillance system established to monitor the number of children in the population with ASDs or other developmental disabilities In... 3 months Yellow - Counties in the ADDM Network in 2008 22 Missouri Missouri The Missouri Autism and Developmental Disabilities Monitoring Project (MO-ADDM) The Missouri Autism and Developmental Disabilities Monitoring (MO-ADDM) Project is a multisource surveillance project designed to monitor the number of 8-year-old children with ASDs, or cerebral palsy (CP), and cooccurring epilepsy (2002-2006 surveillance... in the ADDM Network in 2008 16 Florida Florida Florida Autism and Developmental Disabilities Monitoring Project (FL – ADDM) The Florida Autism and Developmental Disabilities Monitoring (FL-ADDM) Project is a multisource investigation to monitor the number of 8-year-old children in the population with ASDs This surveillance system helped establish an accurate count of the number of children and families... prevalence of autism and the educational and health care needs of children with autism and their families What are some of the resources available in Pennsylvania for children with developmental disabilities, their families and the professionals who serve them? Other autism programs include the • ASCEND The Asperger and Autism Alliance for Greater Philadelphia http://www.ascendgroup.org/ • Autism Institute... years, 4 months Yellow - County in the ADDM Network in 2008 12 Arkanas Arkansas Arkansas Autism and Developmental Disabilities Monitoring Program (AR-ADDM) The Arkansas Autism and Developmental Disability Monitoring (AR ADDM) Project is a multisource investigation to monitor the number of 8-year-old children in the population with ASDs or other developmental disabilities This surveillance system provides... regulations, and procedures are in compliance with the Individuals with Disabilities Education Act (IDEA) and eligible children and youth with disabilities are receiving a free appropriate public education (http://www.azed.gov/special-education) • Arizona Division of Developmental Disabilities provides services and supports to help eligible individuals with developmental disabilities achieve self-sufficiency and. .. services and educational opportunities (www.marylandpublicschools.org/ MSDE/divisions/earlyinterv) • Autism Society of America (ASA): Dedicated to increasing public awareness about autism by providing information and education, and supporting research and advocating for programs and services for the autism community (http://www .autism- society.org) To find out more about ASA local chapters in Maryland, . Autism and Developmental Disabilities Monitoring Network -2012 National Center on Birth Defects and Developmental Disabilities Division of Birth Defects and Developmental Disabilities Community. County in the ADDM Network in 2008 13 Arkanas Arkansas Arkansas Autism and Developmental Disabilities Monitoring Program (AR-ADDM) The Arkansas Autism and Developmental Disability Monitoring (AR. counties. 15 Colorado Colorado Colorado Autism and Developmental Disabilities Monitoring Program (CO-ADDM) The Colorado Autism and Developmental Disabilities Monitoring (CO-ADDM) Program is a multisource