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Press Briefing Transcript

CDC Telebriefing on Prevalence of Autism Spectrum Disorders

Thursday, March 29, 2012 at Noon ET

OPERATOR: During the question and answer session of today's call you may press star 1 to ask a question.  Today's conference is being recorded and Mr. Tom Skinner, you may begin, sir.

TOM SKINNER: Thank you, Shirley.  Good afternoon, everyone and thank you all for joining us for this telebriefing on today's report on the prevalence of autism spectrum disorders.  With us today is the director of the CDC, Dr. Thomas Frieden, Dr. Coleen Boyle, director of CDC's National Center on Birth Defects and Developmental Disabilities, Dr. Susan Hyman, chairperson of the Autism Subcommittee of the American Academy of Pediatrics, and Dr. Mark Roithmayr president of Autism Speaks.  Dr. Frieden will begin with opening remarks and then we'll move to the other speakers, all who will speak for about three minutes and then we'll take your questions at the end.  So I’d like to turn it over to Dr. Frieden.  

THOMAS FRIEDEN: Hello and thank you very much for joining us.  CDC has been tracking autism using the same method for more than a decade.  Today we're releasing estimates from 2008 from the sentinel sites where our monitoring system operates.  These data indicate that in these sites overall, one in 88 children have been identified with autism spectrum disorder by the age of 8.  In recent years, we've learned more about autism than ever before and we know now that autism is nearly five times more common among boys than among girls, with one in 54 boys identified compared with one in 252 girls.  We also know that more children are being diagnosed at earlier ages with the growing number by age 3, but still, most in this study were not diagnosed until after they reached age 4.  The data show that doctors are getting better at diagnosing autism and also that communities are getting better at providing services to the children and families who need them.  One thing the data tell us with certainty is that there are many children and families who need help. 

We know more now about which children are more likely to have autism.  We know at what age they're likely to be diagnosed and we know whether progress has been made in diagnosing children with autism early.  This information helps communities to plan for services and understand where improvements can be made to help serve children with autism.  Many children are not receiving services early enough or not consistently enough to help them reach their full potential.  People want answers to what's causing autism and to why we're seeing such an increase in identified cases and so do we.  On a national scale, CDC's work is helping to guide critical autism research across the country.  The results of today's study highlight the importance of effort throughout the administration to address the needs of people with autism spectrum disorder, including the work of the Interagency Autism Coordinating Committee or IACC of the Department of Health and Human Services. 

There are activities throughout the Department of Health and Human Services to provide support for states to increase research through the National Institutes of Health, to support state efforts on advocacy and strengthening systems to care for children with autism through the Medicaid and Medicare programs, to provide support through the health care system and through other parts of the federal government including the Department of Education and Department of Labor.  Autism is a complex condition, and there remain many unanswered questions.  We are learning more every day, but still have a great deal to learn.  CDC's work is helping to guide autism research around the country.  This is critical information that our country needs because every child deserves to live and grow to their fullest potential. 

TOM SKINNER: Thank you, Dr. Frieden.  Now we'll hear from Dr. Coleen Boyle and that is spelled c-o-l-e-e-n b-o-y-l-e who is the director of CDC's National Center on Birth Defects and Developmental Disabilities.  Dr. Boyle? 

COLEEN BOYLE: Thank you.  All of us at CDC are committed to this important work.  We are committed to continuing to track autism.  We are committed to the research to identify causes of autism, and committed to identifying children with autism as early as possible.  Today's estimates of one in 88 children identified with autism marks a 23 percent increase from our last report.  We know that people want answers to what's causing this increase and so do we.  Some of the increase is due to the way children are identified, diagnosed and served in their local communities.  Although exactly how much is due to these factors is not known.  To understand more, we need to keep accelerating our research into risk factors and causes. 

The tracking CDC does gives us more than just a number.  Tracking provides a more complete picture of autism, helping us to understand how communities identify children with autism.  We see how the number and the characteristics of children with autism vary across the country.  For example, the numbers vary from one in 210 children identified in Alabama to one in 47 children in Utah.  Tracking also helps identify potential risk factors.  Because of our tracking, we know more about how advanced parental age and premature birth contribute to a child's risk of having autism.  Tracking guides our research and the research of other scientists across the country.  At CDC we are conducting the largest study in the United States to help identify factors that put children at risk for autism.  We've completed the first phase of this study.  Ultimately we'll be better -- we'll be able to better understand what makes one child more likely to have autism than another. 

Our tracking also tells us that there are many children with autism who are not being diagnosed as early as they could be.  We have also heard from many parents that they were concerned long before their child was diagnosed.  We are working hard to change that.  This is critical because there's a growing body of research that tells us that the earlier a child with autism is identified and connected to services, the more the child will benefit from intervention.  CDC has tools to help families track their child's development.  These tools are free and on our website and we're working hard to put them in the hands of doctors, child care providers and parents.  Importantly, we've developed national goals that will help track progress and early screening diagnosis, enrollment, and services for children with autism. 

The most important thing for parents to know is that it's critical to act quickly if there is a concern about your child's development.  Don't wait.  Talk to your child's doctor about your concerns.  Call your local early intervention program or school system for free assessment and remember, you don't need a diagnosis to get services.  It's never too late to get help for your child.  Today we've shared that there are more children being identified with autism in communities across the country.  All of us at CDC are committed to our important work in autism.  We are committed to continuing to track autism, committed to the research to identify the causes of autism and committed to identifying children with autism as early as possible. 

Autism's impact on families is a critical area of focus for our two partners here with us today.  We are proud to have worked with the American Academy of Pediatrics in a number of capacities including their work and establishing recommendations for early screening diagnosis and referral, and I’m delighted that Dr. Susan Hyman, chairperson of the Autism Subcommittee of the AAP could join us today.  We appreciate the support of our partner, Autism Speaks and applaud their leadership and advocacy for autism and we are honored to have Mark Roithmayr, president of Autism Speaks here with us. 

TOM SKINNER: Now we will hear from Dr. Susan Hyman.  That's spelled h-y-m-a-n who is the chairperson of the Autism Subcommittee of the American Academy of Pediatrics. 

SUSAN HYMAN: Thank you.  Pediatricians understand how concerning the increase prevalence of autism reported today is. Parents want to know what causes autism as does the American Academy of Pediatrics and all of the pediatricians that care for children with autism every day.  The CDC has documented a continuing increase in the prevalence of autism.  The children studied for this report were 8 years old in 2008.  While the age of diagnosis for these children was younger than previous reports, at over 4 years of age, it is not early enough.  In fact, just over 20 percent of the children had not been diagnosed during this study.  The AAP strongly believes in the importance of early and continuing screening and surveillance of autism to ensure that children are identified and referred for effective services as early as possible.  The AAP recommends that all children be screened for autism at 18 and 24 months and encourage a 30-month screen.  The sooner autism is identified.  The sooner an intervention program can start. 

Our educational efforts to promote screening by pediatricians and referral for intervention is aided by the wonderful tools for parents like the “Learn the Signs, Act Early” materials developed by CDC.  To meet the need for increasing numbers of diagnostic evaluations that these numbers suggest, schedule programs will need to continue to support post graduate training of developmental experts.  It's also important to collect data on the prevalence of autism like this study does.  Knowing how many children are affected enables communities to plan and allocate their resources so children can receive the therapies and services they need. And as these children with autism become adults with autism, appropriate services need to expand through the life span. 

Studies like this also help us target our limited research dollars as more and more research is dedicated to answer the questions about cause and treatment of autism than ever before.  Information from the ADAM network informs and drives this continued research.  There is an increase in the prevalence of autism in black and Hispanic children in this data compared to previous studies.  We have to examine this data to understand why that is, but what's important to note is that identifying children with autism early gives them the best chance at benefiting from therapies.  All children need a medical home, a source of primary care that is available, accessible and culturally confident.  Efforts to provide developmental screening in the context of the medical home for traditionally underserved populations and for all children needs to be a priority area for the AAP with health care.  I would like to commend the CDC on this careful and extensive study.  We will all need to work together to advocate for early screening and diagnosis, effective treatments and the research that will help find the cause of autism, as well as successful intervention. 

TOM SKINNER: Thank you, Dr. Hyman.  Our last speaker before we get to your question and answers is Mr. Mark Roithmayr who is president of Autism Speaks.  Mr. Roithmayr? 

MARK ROITHMAYR: Thank you.  I want to thank the CDC and particularly Dr. Frieden for this invitation today.  I want to particularly note the comprehensive data collection report and the critical need for the data the CDC has been providing for more than a decade now.  Merriam-Webster defines the word epidemic as excessively prevalent, affecting a disproportionate large number of individuals within a population, community or region at the same time.  With the new Centers of Disease Control and Prevention numbers showing that one in 88 children in the United States are being diagnosed with autism, a nearly doubling of prevalence since the CDC began tracking this number, autism is now officially becoming an epidemic in the United States.  We are dealing with a national emergency that is in need of a national plan; and one in 88 we now have over 1 million children directly affected by autism. 

According to a newly released study, the annual cost of autism in the United States is a staggering $126 billion a year, more than tripling the cost analysis from six years ago.  Behind all these statistics are real families, real individuals struggling each and every day.  Some with autism struggling to find satisfying jobs where they can productively use their talents and abilities.  Others with autism have extremely complicated medical and social challenges.  Make no mistake, though, wherever one falls on the spectrum all with autism struggle each and every day and it is clearly time we as a caring society commit to a national plan, a comprehensive plan that substantially increases all efforts to date.  A call to action that funds more basic science uncovering the underpinnings of autism.  Funding more environmental research detecting the causes of autism accelerates the funding and development of effective medicines and treatments.  Commits to a strategy where all children from every background are diagnosed no later than 18 months of age and commits to a national training corps and training more therapists and service providers as well as specially trained teachers into the field. 

We also need to address as it's been pointing out, the growing issue of adults as since the first study that the CDC has done, those children were born in 1992 and they are now turning 20 this year.  The needs of adults include continuing education, employment, housing and residential living and community integration and here, too, we need a national training corp to train professionals to work with our adults.  As the nation's leading science and advocacy organization, Autism Speaks calls on the entire nation to commit to a national plan, a true public/private partnership and a coalition of the willing, if you will.  From President Obama to each of the republican candidates for president to all members of congress, we desperately need deeper and broader funding.  The CDC and Dr. Frieden whose funding of this prevalent study is in jeopardy of being cut going forward.  Secretary Sebelius and the Department of Health and Human Services for critical delivery of services, Dr. Francis Collins from the National Institutes of Health for increased research and the federal government cannot do this alone.  We need the private sector as well as state and local governments to be part of this plan.  Right now insurance companies and the majority of self-funded plans discriminate against families with autism denying reimbursement for the basic evidence-based services that often dramatically improve the quality of life with children with autism.

MARK ROITHMAYR: There are pharmaceutical companies that can speed the process of affective medicines for people living with autism to improve communication, socialization and repetitive behavior for the core symptoms of autism.  We need companies across all industries to commit to hiring the 74 percent of adults with autism who believe they have the potential to be employed if just given the chance and we need employers of all parents who have children with autism to become much more family friendly.  Way too many mothers of children with autism have to stop out of their careers because their work environment cannot accommodate their schedules.  We need local schools to deliver individualized and quality-driven plans to meet autisms ever growing demand for appropriate special education services.  We need faith-based and community-based organizations who can provide respite services for parents and caregivers as well as recreational and community integration programs with people with autism.  The list goes on.  Siblings, grandparents, aunts, uncles, friends and neighbors and one in 188, one in 54 boys we are now hard pressed to find anyone in the nation who is touched by autism.  Ultimately, collectively in partnership, the question we ask ourselves is why over the last two decades has there been such a tremendous increase? Dr. Peter Beardman of Columbia University was funded by the NIH to answer this very question.  His findings have revealed that the increase in prevalence is only partly explained by the broadening of the diagnosis, improved detection and more awareness.  A large portion of the increase, some 50 percent remains unexplained.  That is why we need to aggressively fund research including the critical study of potential environmental factors. We need the answers.  At one in 88, the United States is experiencing an autism epidemic.  This is a national emergency in need of a national plan. 

TOM SKINNER: Shirley, I think we're ready for questions, please.  We'll allow each reporter to ask a question and a follow up and we'll move to the next question. 

OPERATOR: Thank you.  We will now begin the question and answer session.  If you would like to ask a question please press star 1.  Please record your name clearly.  To withdraw your request you may press star 2.  One moment, please.  Our first question comes from David Brown with "Washington Post," you may ask your question. 

DAVID BROWN: Hi, thanks a lot.  I'm wondering, is there any chance that this is not a real trend of increase in this -- the prevalence of this disease.  We'll put it another way.  Is it possible that this steady trend over more than a decade is completely attributable to case finding, change in definition and greater increases of services and accessing of services, etcetera, etcetera, as opposed to an actual increase in disease?  I know there's no definite answer to this, but I would like each of the speakers to tell me whether they think this represents.  You can say now that this represents an actual increase in the prevalence of this disease.  

THOMAS FRIEDEN: This is Dr. Frieden.  As we know, doctors have gotten better at diagnosing the condition.  Communities have gotten better at providing services, so at this point, I think there is a possibility that the increase in identification is entirely the result of better detection.  We don't know whether or not that is the case, but it is a possibility.  What we do know for certain is that autism is common and needs to be effectively served.  So we need to continue to increase the number of kids who are detected, detected early and enrolled in services early. 

COLEEN BOYLE: This is Coleen Boyle.  Dr. Coleen Boyle.  I would just add to what Dr. Frieden said with some facts from the study, and that is over time, we know that children who come into our study are much more likely to have a community diagnosis.  Dr. Frieden's comments about the fact that doctors are getting better, that communities are getting better in identifying children.  We do have clues from that within the data that we are reporting on today. 

SUSAN HYMAN: This is Dr. Susan Hyman.  I would concur with Dr. Boyle that a great part of this data may be related to increasing identification.  More and more of the children have higher cognitive abilities, but the reason that you do continuing scrutiny of an epidemiologic nature is to answer the very question you're asking, which is, is there something else?  Is there another cause? 

COLEEN BOYLE: I would also add to that one additional thought and that is we are engaged in research to really understand the causes for autism and we are conducting the largest study in the United States to understand what puts children at risk and answers to that question will really help us understand more fully what's going on. 

MARK ROITMAYR: This is Mark Roithmayr.  In very much respect to Dr. Frieden because I want to thank him for being the first head of the CDC to be here for the release of the autism statistics as well as his personal interest in autism that he's shown.  The only part of the increase is better diagnosis and broader diagnosis.  There is a great unknown and something is going on here that we don't know is going on, and the other point I will make is that at 1 in 88 and I know we can agree on this, these individuals with autism, they're here, they're now and they have real issues and those issues, the demand is outstripping the supply right now and I think we can all agree on that. 

TOM SKINNER: Next question, Shirley. 

OPERATOR:  The next question comes from Mike Stobbe with "The Associated Press," you may ask your question.

MIKE STOBBE: Hi.  Thank you for taking my question.  Two questions, actually.  I think you all  talked about the age of diagnosis was around 4 and that was lower than had been previously.  What was it previously from the 2006 data and the second question, Dr. Frieden said many children are not receiving services early enough for consistently enough to reach their full potential.  I was wondering if you all had an idea of how many kids are in that boat or not getting the services they need early enough either as a proportion of autistic kids or just as a raw number? 

COLEEN BOYLE: To answer, this is Coleen Boyle.  To answer your first question, the change in the median age for identification or diagnosis was 4 1/2 in 2006 and 4 in 2008.  The other key piece of -- the other key piece of information is the fact that a greater percentage of children are identified before the age of 3.  So we did see a change over time in the number of children who were actually identified and diagnosed before age 3.  I'm sorry.  Your second part of your question.  Can you repeat that? 

MIKE STOBBE: Dr. Frieden said many children are not receiving services enough or consistently enough to reach their full potential.  I was wondering how many kids do you think are in that situation? 

COLEEN BOYLE: We don't know for certain in terms of actual numbers. Data indicates in terms of the delayed age identification, that clearly, there are many children who are not receiving early identification.

MARK ROITMAYR:  At 4 years old it's still too late.  We need to get this down to 18 month of age to truly have the greatest impact and affect we can have on a child.

TOM SKINNER: Next question, Shirley.  

OPERATOR: Thank you.  This question comes from Daniel De<oon with “WebMD,” you may ask your question. 

DANIEL DENOON: Thank you for taking my question.  As we see these prevalence getting higher and higher with each two-year survey, it really does seem we are approaching a crisis situation.  Why the 2008 numbers?  Why aren't we seeing at least a preliminary look at the 2010 numbers which should be in the country by now? 

COLEEN BOYLE: So we are in the --

DANIEL DENOON:  Your name. 

COLEEN BOYLE:  I'm sorry.  This is Dr. Coleen Boyle.  We are in the field collecting our 2010 data and we should have those data out by -- in the next two to three years.  It takes us a long time.  This is very detailed information, and it takes us a while.  We actually have to go to multiple sites within the community, medical sites, school sites and it is a big task. 

TOM SKINNER: Next question, please? 

OPERATOR: Thank you.  This question comes from Karen Weintraub with "USA today."  You may ask your question.

KAREN WEINTRAUB: Hi, thanks.  I was wondering if you think the definitional change that was proposed in the DSM 5 would you think limit, one Yale researchers think would limit,  the number of people on the spectrum and how that would affect the count of children with autism spectrum disorders? 

COLEEN BOYLE:  That's an important question, and a question that's of concern to parents.  We don't know the full impact of that, but we, fortunately, the way we collect the data, we'll be able to apply any revision to the DSM and look at that impact over time. 

SUSAN HYMAN: This is Dr. Susan Hyman.  One of the things I want to point out is the last definition was made in 1994 and we know a whole lot more now than we knew in 1994.  So there's the real possibility that the new definition will actually be better for children and better for families.

MARK ROITMAYR:  If I can just add on what Susan's saying it's imperative that the DSM 5 not exclude anyone on the spectrum, and I believe that's what we'll see. 

TOM SKINNER: Next question, Shirley? 

OPERATOR: Thank you.  This question comes from Jean-Louis Santini, AFP.  You may ask your question. 

JEAN-LOUISE SANTINI: I have another one.  It's about the statistics.  So in a year you are talking about is 2008 and you compare to 2006, that's correct.

 COLEEN BOYLE:  The 23 percent increase is for 2006 compared to 2008.

JEAN-LOUISE SANTINI: Ok, and when the CDC started the statistic about autism and since you started, what was the increase of the cases. 

COLEEN BOYLE:  Between 2002 and 2008, we have seen a 78 percent increase in children identified with autism. 

MARK ROITMAYR:  150 to one and one in 88.

JEAN-LOUISE SANTINI:  Okay.

TOM SKINNER:  Next question, please.

OPERATOR:  Thank you.  This question comes from Shirley Wang "Wall Street Journal", you may ask your question. 

SHIRLEY WANG: Hi, thanks for taking my call. My question is about whether you have the figures broken down by diagnosis, autism versus, PDNOS, versus, Asperger syndrome and whether you think that breakdown of information might help also figure out whether this is, you know, sort of a better diagnosis and identification question and sort of expanded definition versus, you know, some other factors going on.  Do you have data and what do you think that would mean if you did have that? 

COLEEN BOYLE: You are asking whether or not we have sub-type information? 

SHIRLEY WANG:  Exactly. 

COLEEN BOYLE:  Are we reporting sub-type?  No we're not.  The one thing with the sub-type is -- age at diagnosis and that varies considerably from 48 months for children who have Autistic Disorder and 75 months for children who have Asperger Disorder.

SHIRLEY WANG:  I'm wondering, though, if there's been an increase if you can tell in the data.  If there have been more kids diagnosed with ASD as compared to autism over time.  Would that shed some light on whether there is some kind of environmental risk factor that's increasing or if this is more about, you know, kids with different abilities being diagnosed with conditions than were previously diagnosed? 

COLEEN BOYLE: The proportion of children between 2006 and 2008 is similar in those sub-types. 

SHIRLEY WANG: Okay.  Thank you. 

TOM SKINNER:  That was Dr. Boyle speaking.  Our next question, please, Shirley? 

OPERATOR: Thank you.  Our next question comes from Dena Bunis with Congressional Quarterly.  You may ask your question. 

DENA BUNIS: Thank you very much.  The release estimates one in 88 children in the United States has been identified with this, but if you look at the abstract, it makes the point of saying because the network sites don't make up a nationally representative sample that these estimates should not be generalized to the United tates as a whole so I’m trying to figure out, which is correct?  Should we say one in 88 in the United States or should we say one in 88 among these 14 sites?  One more question for Mark Roithmayr, if he could say what study he was citing in terms of the cost.

COLEEN BOYLE:  This is Coleen Boyle.  I'll answer the one in 88 question. So the one in 88 does refer to the 14 communities and they were selected in a competitive fashion, so they are not nationally representative.  However, the prevalence from the 14 countries -- excuse me, for our 14 communities and 14 states really do line up well with other data for the United States.  So, for example, there are a number of studies on national survey data that showed very comparable prevalence rates. 

DENA BUNIS:  So, are you comfortable with saying it is one in 88 in the United States?

COLEEN BOYLE:  Again, technically it's one in 88 in these 14 communities.

MARK ROITHMAYR: Let me add on to Coleen Boyle, and because of the great consistency over the years of every year CDC has done the study,  I do think it's appropriate to say one in 88 for the entire country.  The study I was referring to before is the study that Autism Speaks Commission working with the World Health Organization as a consultant.  It has just come out in the last 24 hours and it shows the $126 billion annually that is being spent on autism in the United States and I will make the point that that is based on the old now one in 110 children being diagnosed with autism when we extrapolate in the new data, the new statistics- that one in 88- and I believe it's $137 billion that we're talking about. 

DENA BUNIS:  Thank you. 

TOM SKINNER: Shirley, we've got time for one or two more questions. 

OPERATOR: It comes from Eben Brown of Fox News Radio; you may ask your question. 

EBEN BROWN:  Hi, good afternoon.  And earlier, it was discussed that parents should be taking a closer look in early development to hopefully recognize the signs.  How can they recognize the signs and how early can they begin to notice the signs in the child? 

COLEEN BOYLE: That's a wonderful question and parents know their own child best, but if they do have concerns, the important thing is not to wait and it's to act early and there are a couple of critical things that parents can do and they can talk to their doctor about their concerns and the CDC has tools and checklists on their website to really make that conversation easier. The other thing that parents can do is they can contact their local early intervention program and school system for an evaluation of their child and remember --

EBEN BROWN:  What will a child be doing or how will they be behaving to prompt a parent to say something is not right here?  With a young child especially if they're still somewhat infantile I would think that -- how would you determine autistic behavior from a kid being a kid?

SUSAN HYMAN: This is Dr. Hyman.  I think you're asking excellent questions.  There are many, many, many symptoms that we look at for early child development.  Children who aren't pointing, who aren't making eye contact with communication and who aren't developing language at the same rate may have autism but they may have other things.  So it's really important for parents who have concerns to bring them up, and for them to be persistent in their concern, so that appropriate evaluation can take place and there are many developmental disorders with autism and any concern the family has to be taken seriously.  The milestones such as early language are on the CDC website and they're on the Academy of Pediatrics website, but don't defer. 

MARK ROITHMAYR:  You can go to autismspeaks.org.  The signs at 3, 6, 9 and 12 months are there.  A video glossary is there, and it shows a typically as well as an autism-developing infant.  You can put in your zip code and it can tell you where you can go locally. 

TOM SKINNER: Shirley, thank you.  Thanks to everyone for participating in today's briefing.  For more information about this study, please visit cdc.gov/autism; and for more information on CDC's tools to help families track their child's development, you can visit cdc.gov/actearly.  To learn more about the administration's commitment to combatting autism please visit www.hhs.gov/autism.  A transcript of this briefing will be available later this afternoon, and any follow-up questions, please contact our press office at 404-639-3286.  Thanks again 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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