CDC media briefing on autism spectrum disorder

OPERATOR: Welcome and thank you for standing by. At this time all participants are in a listen-only mode. During the question and answer session at today’s call, you may press star one to ask a question. Today's conference is being recorded, and at this time, I’ll turn the call over to Mr. Llelwyn Grant. You may begin, sir.

LLELWYN GRANT: Thank you, operator, and good afternoon, everyone. I wish to thank you all for joining us today for our media telebriefing to discuss the release of the MMWR surveillance summary report on prevalence of autism spectrum disorder among children eight years old from 11 sites in the United States. This study is also based on 2010 data. Here to discuss the report is Dr.Coleen Boyle, and that's spelled C-O-L-E-E-N, last name Boyle, B-O-Y-L-E, who is the director of CDC's national center of birth defects and developmental disorders. During the question session, Dr.Boyle will be joined by Dr.MarshalynYergin-Allsopp. And Marshalyn is spelled M-A-R-S-H-A-L-Y-N Yergin, Y-E-R-G-I-N-A-L-L-S-O-P. Dr.Yergin-Allsopp is the chief of CDC's developmental disabilities branch and she'll be joining Dr.Boyle to answer your questions. In addition joining us today is Dr.Katherine Beckman from the administration of children and families, who will provide a short overview of a new exciting initiative that will be launched later today. At this time, I would like to turn it over to Dr.Boyle.

COLEEN BOYLE: Thank you. I appreciate each of you joining the telebriefing on this important public health issue that impacts many children with autism, their families, and communities across the United States. Autism touches many of our lives. We all have a family member, a friend, a neighbor, a coworker, a classmate, whose life has been affected in some way by autism. Today's MMWR surveillance summary shares the latest information on autism prevalence. The number of children identified with autism continues to rise. CDC estimates that one in 68 children has been identified with autism. This estimate is based on information collected from health and special education records of children who are eight years old and living in 11 communities in Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, north Carolina, Utah, and Wisconsin in 2010. These data are from CDC-sponsored autism and developmental disabilities monitoring network. The new estimate exceeds previous overall estimates, roughly it’s 30 percent higher than our last estimate of one in 88 children. To better understand the why, there's an urgent need to do more research. There's also an urgent need to put these findings to work for children and families. More is understood about autism than ever before, but these numbers are an important reminder of the need for answers and to use CDC's data to help children now. Some aspects of the picture of autism have remained the same. Autism is almost five times more common among boys than girls, with one in 42 boys, or 2.1 percent, and one in 189 girls, or.5 percent. White children are more likely to be identified with autism than black or Hispanic children, and most children with autism are not diagnosed until after age four, even though autism can be diagnosed as early as age two. However, the picture of autism in communities is also changing. Over the last decade, the most notable change in the characteristics of children identified with autism is the growing number who have average or above average intelligence, from a third in 2002, to nearly 50 percent in 2010. We know that health and education agencies and organizations in these communities are serving more children with autism with high intellectual ability. It could be that doctors are getting better at identifying these children, there could be a growing number of children with autism and higher intellectual ability, or it may be a combination of better recognition and increased prevalence. CDC is working with communities to understand the changing picture of autism. Research tells us that an earlier a child with autism is identified and connected with services, the better. Our message to parents is, if you have a concern about how your child plays, learns, speaks, acts, or moves, take action, don't wait. CDC has checklists and other resources to help parents track their child's developmental milestones. These materials are free, and you can find them at CDC.gov/milestones. CDC has joined others across the federal government to promote developmental and behavioral screening through the “Birth to 5 Watch Me Thrive” campaign, which we'll be launching in a telebriefing by the Administration for Children and Families at 2:00 p.m. this afternoon. You'll get an opportunity to learn a little more about this program after my remarks. We believe that CDC's autism tracking method provides the most complete picture of autism in various communities across the United States. CDC's methods help us to look at more than just how children have autism, as important as that is, it also helps us understand more about which groups of children are more likely to be identified with autism and at what age they are likely to be diagnosed. Communities across the country can use this information to promote early identification and to plan for training and service needs. They can also use the information to guide research and inform policy so that children and families get the help they need, when they need it. CDC will continue to work with our state partners to track autism in communities. We will continue to support research and to risk factors that put children at risk for autism, and we will continue to provide resources to families, doctors, teachers, and promote early identification, the most powerful tool we have right now to make a difference in the lives of young children with autism.

LLELWYN GRANT: Thank you, dr.Boyle. At this time, I would like to invite Dr.Katherine Beckman to share this exciting news about a new initiative that will be coming out later today. Dr.Beckman?

KATHERINE BECKMAN: Thank you so much. Especially given the autism data that Dr.Boyle mentioned, I am especially delighted to share a very special initiative with all of you that we're calling “Birth to 5 Watch Me Thrive.” Maximizing the health and development of children and families in the United States is an urgent priority of this administration. Making sure our youngest children are screened and given support early is a priority for the departments of Health and Human Services and Education. As a result, federal partners across both of these departments have come together to create the “Birth to 5 Watch Me Thrive” initiative. There are four goals: The first is to celebrate milestones. Every family looks forward to seeing a child's first smile, first step, first words. Regular screenings can help raise awareness of child's development, making it easier to expect and celebrate developmental milestones. The second goal is to promote universal screening. We know that kids need support and attention in the early years to make sure they stay healthy and happy, just like hearing and vision screenings assure that children can hear and see clearly, developmental and behavioral screenings track a child's progress in areas such as language, social, or motor development. Developmental and behavioral screening really should just be a regular part of growing up. The third goal is to identify any possible delays and concerns early. Screenings can help children succeed in school and beyond. With regular screenings, families, teachers, and other professionals can assure that young children get the services and supports they need as early as possible to help them thrive alongside their peers. And finally, our fourth goal is to enhance developmental supports. We know that families are a child's first and most important teacher. Combining the love and knowledge families have of their children with tools, guidance, and tips recommended by experts can make the most of developmental support children receive. So today at 2:00 p.m., we are launching an unprecedented multifaceted initiative that will assure that the wide range of adults who love, work, and care for young children have an array of resources tailored to fit their needs and those of the families they serve. The launch will include a compendium of first-line research-based screening tools that meet specific quality inclusion criteria, accompanying this compendium is a litany of users guides for multiple audiences, from early care and education providers, to pediatricians, to child welfare caseworkers, to home visitors and families, as well as communities that help folks choose the best screening tool for their child population and provider setting, and it also includes ways to talk to families, as well as resources and tip sheets and guidance on finding help at the local level. So, I urge you to visit www.hhs.gov/watchmethrive for all of the aforementioned resources. We are very excited about this effort, and, you know, I welcome you to join the excitement. Thank you.

LLELWYN GRANT: Thank you, Dr.Beckman, and Dr.Boyle. At this time I think we're ready for questions. Shirley?

OPERATOR: Thank you, we will now begin the question and answer session. If you would like to ask a question, please press star one. Please unmute your line and record your name clearly. To withdraw your question, you may press star two. Again, press star one to ask a question, and one moment please for our first question. Our first question comes from Emily Willingham with Forbes. You may ask your question. Emily, your line is open. Go ahead with your question.

LLELWYN GRANT: Shirley, can we go to the next question and come back to Forbes?

OPERATOR: Certainly, we'll go ahead and go with Mike Stobbe with Associated Press. You may ask your question.

MIKE STOBBE: Thanks. I just want to say thank you for taking my question. The estimate of how many children this might potentially mean have an autism spectrum disorder, one million--1.2 million, is that children or children and teens?

COLEEN BOYLE: These are children under-- this is Coleen Boyle, these are children under 21.

MIKE STOBBE: Okay, thank you.

COLEEN BOYLE: You're welcome.

OPERATOR: Thank you and next question comes from Kevin Finnegan with CBS News. You may ask your question.

KEVIN FINNEGAN: Thank you, good morning. In looking at the methodology here, is there any danger of over diagnosis or people putting-- people getting into this spectrum with very mild symptoms? Is the issue of over diagnosis come up?

COLEEN BOYLE: We use our method, which includes a review of school and medical records and collect information on the behavioral characteristics of children, and then we have a team of clinicians who actually evaluate that and apply a standardized definition to that. So, obviously, we're reflecting what's going on within the context of the community and feel very good, or feel that our methods are very reliable and that the diagnosis of autism as reflected in those records.

LLELWYN GRANT: Next question, Shirley.

OPERATOR: Thank you, next question comes from Deborah Kotz with Boston Globe. You may ask your question.

DEBORAH KOTZ: Thank you very much, with Boston Globe. Just trying to get a sense as to if there's any way to explain the 30 percent jump in just two years. Are there any theories as to why this has jumped so much? Is it-- did any of these sites that the CDC is looking at, have they changed the parameters of what they are considering to be autism, or have they offered more services to children diagnosed with autism that they may not have offered before?

COLEEN BOYLE: So, our data gave us a good picture of what is happening in the community, but just some clues about why, so what is happening in terms of these changes, so as I mentioned in my remarks, the data do suggest that some of the increase is how children are identified, diagnosed, and served within those communities. Our methods have not changed, so that's been constant over time. One thing we can say about the changing picture in terms of the better awareness and the increase in services, as well as just the changing picture of autism, we know that today 80 percent of children who are in our system actually have a community diagnosis of autism. And that has increased over time, so that's an indicator that health care providers are not getting better at, but they are developing skills and as the picture of autism is evolving, that's reflected in our data.

LLELWYN GRANT: Next question, Shirley.

OPERATOR: Thank you. Next question comes from Leonard Bernstein with Washington Post. You may ask your question.

LEONARD BERNSTEIN: Hi, thanks for taking my question. I wanted to make sure i understand the data is taken just from eight year olds or children eight and below? And if it's just--

COLEEN BOYLE: Just eight year olds. These are children eight in 2010.

LEONARD BERNSTEIN: And why do you take it from eight year olds?

COLEEN BOYLE: Based on the previous research that we have done, eight was the age where we felt we could get the best estimate for autism prevalence.

LEONARD BERNSTEIN: Why is that?

COLEEN BOYLE: The most complete, because by that time, most children who are diagnosed will be diagnosed by age eight and that's based by previous data. Dr.Marshalyn will give more details on that.

MARSHALYN YEARGIN-ALLSOPP: Hi, I want to add that we've been collecting data in metropolitan Atlanta for more than 20 years, and in the early '90s, we were able to look at our data and look at it in children between three and 10 years of age, and what we noted, not just for autism, but for a number of other disabilities at the peak age of identification was at age eight, so when we started our autism surveillance, we selected age eight and based on our previous data from metropolitan Atlanta.

LEONARD BERNSTEIN: Thank you.

LLELWYN GRANT: All right, next question, Shirley.

OPERATOR: Thank you, next question Bahar Gholipour with Live Science you may ask your question.

BAHAR GHOLIPOUR: Hi, thank you for taking my question. So, I was wondering, can you explain, or do we have any idea why there was such a big difference in the range of the number of children diagnosed with autism in different locations? For example, the difference between Alabama and New Jersey?

COLEEN BOYLE: So, there's two perhaps explanations for that, although we're not quite sure the extent of those, so one is due to how children are, essentially, the resources in the community for identifying, diagnosing, and serving children, and the second one has more to do with the study methods. So the sites that had the lower, or the lowest prevalence estimates, did not have access to as many community sources as those with higher. And particularly, education sources. And we did note differences without those education sources.

LLELWYN GRANT: I think we're ready for the next question, Shirley.

OPERATOR: Thank you. Next question comes from Stacy Burling with Philadelphia Inquirer, you may ask your question.

STACY BURLING: Thank you. I have two questions. One is, the report emphasizes that this data, the sites are not representative of the U.S. so I’m wondering what we can make of them in terms of, you know, the national implications, if any. The other is, I want to understand this 80 percent percentage, I think you were mentioning, your surveyors were able to identify children autistic not previously diagnosed as autistic. What percentage is that now as compared to ten years ago?

COLEEN BOYLE: Sure. I'll address the first one and let doctor address the second. So in terms of the representativeness, these are 11 communities across the United States. We have a very clear, detailed picture of autism within those communities. They are diverse communities. They represent a very large sample size. It really is the best estimate that we have for the U.S., really, the best estimate that the U.S. has for autism.

MARSHALYN YEARGIN-ALLSOPP: And the second part of your question has to do with the 20 percent of children who did not have a diagnosis of autism based on information in their records by community providers. So, as Dr.Boyle said, our method is to look in records and look for descriptions of behaviors that might indicate that a child has autism. The second part after this information is abstracted is review of this information by a panel of experts in autism. The features that they are looking for, the reviewers are looking for, are linked to the dsm-4 criteria, so a child may have a description in behaviors in their record that indicate the behaviors are consistent with the diagnosis of autism, but a community provider may not have made that diagnosis. And also the child may not be receiving special services. So that's the way that we're able to identify based on these behaviors that the child fits our criteria for our surveillance system, which is different from a community-based diagnosis. When we first started looking at this with our early surveillance, there were about 70 percent of children that had a community diagnosis, and as Coleen indicated, they are about 80 percent now. So that's the change over time.

STACY BURLING : Okay, thank you.

LLEWYN GRANT: Next question, Shirley.

OPERATOR: Thank you. Next question comes from Sarah Mimms with National Journal you may ask your question.

SARAH MIMMS: Hi, thanks for taking my question. This is for Dr.Boyle. You mentioned white children are much more likely to be identified with some sort of autism spectrum disorder than black or Hispanic children. Do you think that's a reporting issue, or is it actually, is there a larger prevalence in white children?

COLEEN BOYLE: We have no reason to expect from a research perspective that that difference is not due to real differences. We do feel like it's related to how children are identified and diagnosed and served within their communities.

LLELWYN GRANT: Next question.

OPERATOR: Thank you. Next question comes from charlotte Howard with Economics magazine. You may ask your question.

CHARLOTTE HOWARD: Thanks, it's Charlotte from the Economist. Just to follow up on the last question, I’m a little bit confused by the way your methods mitigate for the risk of variation in diagnosis, because it seems your reviewers are able to look for common factors and then determine whether a child has autism spectrum disorder, but then you also just eluded to sort of the difference in services from white children to African American children, for example, so I just want to make sure I understand the degree to which you can mitigate for differences in variation and treatment and the degree to which you can't.

COLEEN BOYLE: So, we use a fairly extensive method to go and identify children, but that child has to have received some services for either autism or a related condition, so the child is not receiving services, the child has not been evaluated, a child has not been diagnosed, then, obviously, we will not pick that child up. So they have to encounter the service system in some way.

MARSHALYN YEARGIN-ALLSOPP: And I’ll add that these children may come to attention not because there's a concern about autism, but because there's a developmental delay or some other problem that has been identified within the community. So these are children that do have to come to attention for a number of reasons, but the reason that they come to attention may not be autism specific.

COLEEN BOYLE: And the other issue may be that there's different documentation within the context of the records that, again, we are as good as the records are.

CHARLOTTE HOWARD: Thank you.

COLEEN BOYLE: You’re welcome.

LLELWYN GRANT: Next question, please.

OPERATOR: Thank you, next question comes from Kerry Young with Congressional Quarterly you may ask your question.

KERRY YOUNG: Just wanted to check, given what you said about the data, is this a real estimate of the numbers that we may see in the population, or is this sort of an estimate of what we know?

COLEEN BOYLE: This is an estimate of identified prevalence. So there are-- there could be children that have not come to attention for whatever reason, and this is what we know in terms of identified prevalence, but it goes well beyond just diagnosed prevalence-- excuse me, diagnosed autism.

KERRY YOUNG: Thank you. That was-- can you identify yourself?

COLEEN BOYLE: Oh, sorry, Dr.Boyle.

KERRY YOUNG: Boyle, thank you, Dr.Boyle.

COLEEN BOYLE: Thank you.

OPERATOR: Thank you, and again, if you'd like to ask a question, press star one. Our next question comes from Steve Silberman with Wired magazine. You may ask your question.

STEVE SILBERMAN: The question's already been asked and answered, so thank you so much.

COLEEN BOYLE: Thank you.

LLELWYN GRANT: Shirley, I think we have time for two more questions.

OPERATOR: Okay, one moment, please. Thank you, next question then comes from Michelle Diamond with Disability Scoop. You may ask your question.

MICHELLE DIAMOND: Yeah, I just wanted to get some clarification on a question that was asked before. Were you actually providing an estimate on the number of children under 21 in the US believed to have autism?

COLEEN BOYLE: So, that's an estimate based on the number of children who are under 21 and implying our prevalence rate to that.

MICHELLE DIAMOND: What was that total figure, was it 1.2 million?

COLEEN BOYLE: It’s about 1.2 million. Again, that's a crudeestimate there.

MICHELLE DIAMOND: Okay so if you take out the 1 in 68 and apply it to the total population, it works out to about 1.2 million?

COLEEN BOYLE: That’s correct.

MICHELLE DIAMOND: Okay, thank you.

LLELWYN GRANT: And our final question, Shirley?

OPERATOR: Thank you. And our final question comes from Chris Kaiser with Med Page Today. you may ask your question.

CHRIS KAISER: Thank you. I was wondering if anybody has any ideas or explanations for the high rate of kids with higher IQs that are being identified with ASD?

COLEEN BOYLE: As I mentioned in my telebrief, it may be that we are getting better at identifying autism. Autism is evolving in terms of our clinical knowledge about it, the criteria around it, and so we do feel like that some of this has to do with how children are identified, diagnosed, and served within those communities, but again, our system tells us what's going on. It doesn’t –it gives us clues about the why.

CHRIS KAISER: But-- can you address maybe what this says about how we were identifying children in the past and what has changed?

COLEEN BOYLE: So there's greater awareness in the community around autism. There's more training of clinicians. Similarly, early childhood educators, CDC actually has great resources for parents, providers, and early child educators trying to really get everyone to better understand the developmental milestones, and that whole effort has increased awareness here. And Marshalyn has something to add, too.

MARSHALYN YEARGIN-ALLSOPP: I would just like to add that we recognize now that autism is a spectrum, so I think in the past we thought of children as being severely affected, meaning children with intellectual disability, children who were nonverbal, children with a host of co-occurring conditions, that was the picture of autism, I think, about ten years ago. Our understanding has evolved to the point that we understand now that there are children with higher IQs and children who perhaps are even not receiving special education services. So our understanding of autism has changed over time, and I think that our numbers may be reflective of some of that, as well.

LLELWYN GRANT: I wish to thank you all for participating in today's media briefing. For more information about the autism and Developmental Disabilities Monitoring Network and today's report, you may visit www.cdc.gov/autism. A transcript of today's telebriefing will be available later this afternoon, and for those who have follow-up questions, please feel free to contact CDC's press office at 404-639-3286. This concludes our media briefing. Thank you all for joining us.

OPERATOR: Thank you, and this does conclude today's conference. We thank you for your participation. At this time, you may disconnect your lines.

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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES