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CDC Prevalence Chat Transcript

 

Today the Centers for Disease Control and Prevention (CDC) updated its estimate of autism prevalence in the United States to 1 in 88 children (1 in 54 boys and 1 in 252 girls). By comparison, this is more children than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.

The new numbers - based on a 2008 snapshot of 14 monitoring sites - represent a 78 percent increase in autism over the previous five years. They represent a ten-fold (1,000 percent) increase in reported prevalence over the last four decades. 

In response to these findings, Lisa Goring, Vice President of Family Services, and Stuart Spielman, Senior Policy Advisor and Counsel hosted a Live chat. Here is the transcript:

 

6:53
  Peter Bell will no longer be hosting the chat because he will be appearing on NBC Nightly News with Chuck Scarborough. In this place we have two hosts Lisa Goring, Vice President of Family Services, and Stuart Spielman, Senior Policy Advisor and Counsel.
 
6:56
 
Comment From Crystal 

Now that the prevalence rate has increased, are there any plans to increase funding for quality educational programs for kids on the spectrum? In NY, the odds of getting into a decent school aged program is synonymous to winning the lottery.

 
6:58
  This is Stuart. Great question, Crystal. The new prevalence data was a shock to many on Capitol Hill. We are certainly making the case that now is the time to increase the federal response to autism. States will have to take notice, as well.
 
6:58
  Testifying before House Appropriations Committee on March 29, Peter Bell, Autism Speaks executive vice president for programs and services, said the nation's autism community is growing increasingly impatient with what it views as an inadequate federal response to the "epidemic" of autism. http://www.autismspeaks.org/blog/2012/03/29/why-do-dollars-autism-go-down-when-prevalence
 
7:02
 
Comment From Melinda Carangi 

I am just wondering, are these numbers reflective of real diagnoses, or do you think doctor's are diagnosing it more so that families can get services, therefore, spiking the numbers?

 
7:02
  Hi Melinda! This is Lisa. We know improved detection and surveillance cannot alone explain the dramatic increase in autism prevalence. We are identifying more children at the higher end of the spectrum, but the increase is only moderate. Research on environmental factors and their interaction with genetic susceptibility is critical to understanding autism risk.
 
7:03
 
Comment From Guest

Stuart with the data being collected from 14 locations is it the process that it can be extrapolated to national numbers?

 
7:04
  This is Stuart: The best information we have is that the prevalence rate is 1/88.
 
7:04
 
Comment From Joanie

Now knowing the incredible odds of a child being diagnosed with ASD, is there anything being done to figure out why so many children are being diagnosed compared to 20 years ago?

 
7:04
  Joanie, this is a good question. We need to continue to fund research to better understand why the numbers are increasing so rapidly.
 
7:06
 
Comment From Guest

Does anyone know why the number ares so much higher now?

 
7:08
  Guest - We know that the increase in numbers is only partly explained by broadening diagnosis, improved detection and more awareness. A large portion of the increase remains unknown. Which is why Autism Speaks is working hard to fund the research necessary to get these questions answered.
 
7:08
  Please check out our Prevalence FAQ: http://www.autismspeaks.org/what-autism/prevalence/prevalence-faq
 
7:09
 
Comment From Dennis A. Brown II

Do you think that insurance companies should cover more people afflicted by a form Autism? I'm talkin' about folks 18 and older. I'm 40...and I have Asperger's Syndrome. I wasn't diagnosed with it until Feb. of '08...which was after I turned 36.

 
7:09
  Stuart: Dennis, it's our position that everyone with autism should get the healthcare they need. Age of diagnosis should not limit care.
 
7:13
 
Comment From Becky

Mark Roithmayr declared autism an epidemic today. I know all of us parents feel that way and all of our advocacy groups do as well but will the government declare autism as an epidemic now?

 
7:14
  Becky, the government has a long way to go in responding to the autism crisis. Mark called for a national strategy to deal with the autism epidemic in America. It's an important piece.
 
7:14
  The following remarks were delivered by Mark Roithmayr, president of Autism Speaks, at the Centers for Disease Control today http://www.autismspeaks.org/blog/2012/03/29/1-88-we-need-strategy
 
7:14
 
Comment From Guest

Which states were changed from the last prevalence data set, and how was that decision made? When the question is still open on prevalence, why is there not a push to monitor prevalence in all 50 states?

 
7:15
  Guest - Hi it's Lisa. You are absolutely right, there is a huge demand for quality adult services. We need to address the growing issue of adults with autism specifically in terms of employment, housing/residential living and community integration. Please take a look at the Adult initiatives that we are working on at www.autismspeaks.org/family-services.
 
7:16
 
Comment From Guest

Lisa -- Although the numbers released by the CDC relate to children, what will happen when these children become adults if the numbers just keep growing?

 
7:16
  sorry about that! Lisa's response was for this question - "Lisa -- Although the numbers released by the CDC relate to children, what will happen when these children become adults if the numbers just keep growing?"
 
7:19
  In response to the states question, there may be more information on the CDC website as to how the states were chosen
 

 

7:21
 
Comment From Terry

How do these numbers and the criteria in the new DSM manual affect early diagnoses of autism? won't many children not get services because they won't meet the criiteria

 
7:22
  Terry - Autism Speaks is working with leading experts in the field as well as community stakeholders to evaluate the potential impact of the DSM revision on our community.
 
7:24
 
Comment From Guest

It seems that most of the cutting edge research in the biological underpinnings of autism is being carried out overseas. What is preventing such research from happening here in the US on an expedited basis, given the huge crisis these numbers represent?

 
7:26
  Hi Guest. That's true there is a lot of research being done overseas, but there is also a great deal being done here. Autism Speaks has funded over $173 million in scientific research. We are funding research designed to better estimate autism prevalence, assess the impact of changing diagnostic criteria, and explore the role of environmental factors including prenatal factors, diet and nutrition, immune challenges, chemicals and toxins. You can read all about the grants we have funded and are continuing to fund at http://www.autismspeaks.org/about-us/grant-search
 
7:27
  You can sort the grants by year, type, institution, etc. We are doing everything we can to fund scientific research, but there is still more to be done.
 
7:27
 
Comment From Kathleen

How do you feel about the claim of many (I work in public education), that the growing numbers simply reflect greater awareness and better diagnosis?

 
7:28
  Hi Kathleen please see the following link about Evaluating Changes in the Prevalence of Autism Spectrum Disorders (ASDs) that we Co-Sponsored with the CDChttp://www.cdc.gov/NCBDDD/autism/documents/EvaluatingChanges_ExecutiveSummary.pdf
 
7:28
 
Comment From Stacy

Is the prevalence increasing in other countries as well? If that is the case then it might go a long way to having people and our government take notice. I wish more people were aware.

 
7:29
  Stacy - there have been studies of increases in other countries. One such study is the prevalence of autism in a total population study in South Korea
 
7:30
 
Comment From Guest

Do you agree that before there's a law that mandates insurance companies cover the cost of care for those with Autism that we still need to find the cause of it? The causes have been investigated...but we STILL don't know what causes it. Is it genetic? Environmental? Self-inflicted?

 
7:30
  Stuart: Effective treatments for autism are available. They should be available now as part of healthcare, as the research into the causes of autism continues.
 
7:31
 
Comment From Tonya

When asking our legislators to continue to fund and increase funding for autism research, what do you suggest parents say and highlight to make the statements and concerns relevant and not sound like whining?

 
7:33
  Tonya research and facts are so important when speaking with legislators. We believe that the new prevalence numbers will be important to our advocacy efforts.
 
7:35
  Stuart: Tell them that autism is not just your concern but the entire community's concern. Parents who have a child on the spectrum lose income. That's not whining but facts.
 
7:35
  Here is a study from David Mandell, PhD, "Implications of Childhood Autism for Parental Employment and Earnings"http://pediatrics.aappublications.org/content/early/2012/03/14/peds.2011-2700.abstract?papetoc
 
7:36
  Please also see "Autism and Family Income: A Mom's Story" for a personal perspectivehttp://www.autismspeaks.org/blog/2012/03/19/autism-and-family-income-mom’s-story
 
7:36
 
Comment From Guest

I just want to say how glad I am that AS got all those people to light their buildings up blue. I think that should help.

 
7:37
  Awareness is the start of a response to the crisis faced by the community.
 
7:37
  please visit lightitupblue.org to take the Pledge to Light it Up Blue!
 
7:38
  As a side note...For those of you who have asked questions or made comments about autism and vaccines, you can read our organization's position on vaccines athttp://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism
 
7:39
 
Comment From Ann

In what ways is the larger disability community working with Autism Speaks to advance these important efforts?

 
7:40
  Autism Speaks works with many national disability organizations to advance awareness and highlight the importance of funding science and services. It's important to realize that autism is a cross-cutting issue.
 
7:41
  Here is a blog post by Vincent Randazzo’s son Michael was diagnosed with Down syndrome early in life, leading Vincent to become actively involved with the National Down Syndrome Society (NDSS). Autism Speaks and NDSS are now partnering in their support before Congress for the Achieving a Better Life Experience (ABLE) Act which would allow families raising children with disabilities, such as autism or Down syndrome, to save tax-free for their future needs. http://blog.autismspeaks.org/2012/02/29/diagnosis-relief/
 
7:42
 
Comment From Janet Edghill

What is the federal government doing at the strategic level to address this national health crisis. Even though the new numbers are higher, the older ones are nothing to sneeze at.

  
 

 

7:44
  Last year Congress passed and the President signed into law the Combating Autism Reauthorization Act, which calls for $693 million in appropriations for autism surveillance, service, and research over 3 years. But especially in light of today's numbers, more clearly needs to be done.
 
7:44
  Here is a link to learn more about Combating Autism Reauthorization Acthttp://www.autismvotes.org/site/c.frKNI3PCImE/b.6376831/k.ACFC/CARA.htm
 
7:44
 
Comment From Lori

I wanted to know that the 1 in 88 ratio, is it still prodominately boys as opposed to girls or has the girls ratio come up?

 
7:44
  Hi Lori - the prevalence number for boys is now 1 in 54 and girls is 1 in 252.
 
7:46
  We don't have CDC numbers for the military. Autism Speaks is working for passage of the Caring for Military Kids with Autism Act, legislation that would make ABA more available to military families.
 
7:47
  Here is a link to our Military Families page on Autism Votes
http://www.autismvotes.org/site/c.frKNI3PCImE/b.5141983/k.A9E4/Military_homepage.htm
 
7:47
  We will also be honoring Military Families on Saturday at the Intrepid in New York Cityhttp://www.autismvotes.org/atf/cf/{2A179B73-96E2-44C3-8816-1B1C0BE5334B}/DoD.Intrepid_2012.pdf
 
7:48
 
Comment From Julie

This isn't meant to be disrespectful, but in all honesty, what does Autism Speaks actually do to help families? Lighting up buildings blue and raising all of this money is nice, but in what specific ways has that money made an actual difference in the quality of a families life or of an affected child? Do you have grants for medical care? Do you have a library of free books and resources? Do you offer financial assistance? Do you offer respite? Anything?

 
7:49
  Hi Julie. We actually have a great Family Services department here at Autism Speaks dedicated to providing resources and information to families affected by autism. We have tons of resources including a resource guide where you can search for local resources in your area that contains over 30,000 resources, a resource library filled with books, magazines, toys, apps, safety products, etc, tool kits for families of individuals of all ages, and lots more! We have an Autism Response Team that is always available to answer phone calls and emails from families. We also have 3 grant programs: one for families in crisis, another for community programs and organizations, and a third that allows summer camps to provide scholarships for underprivileged children with autism. We've given out over $3 million in Family Services grants. You can read all about it at www.autismspeaks.org/family-services, and you are always welcome to call us at 888-AUTISM2.
 
7:50
 
Comment From Chasity

Is there a map that shows the prevalence of children with autism state by state?

 
7:50
  Chasity - there is some state by state information on the CDC website
 
7:53
 
Comment From Carla Alexander-Reilly

I would like to know does Autism Speaks assist with a new non profit start-up. I am in the early stages and need assistance in Essex County

 
7:53
  Hi Carla - we don't assist with capital for start-ups and we can't provide legal advise on the subject, but we do provide funding to organizations to increase services and the field of service providers through our Family Services Community Grants program
 
7:55
 
Comment From terry

Is Autism speaks working with state legislature to get all insurance companies to cover aba services

 
7:56
  Stuart: The short answer is yes.
 
7:56
  Here is a link to our State Initiatives Maphttp://www.autismvotes.org/site/c.frKNI3PCImE/b.3909861/k.B9DF/State_Initiatives.htm
 
7:59
  Stuart: There is an interesting decision that you should be aware of, Terry.
 
8:01
  Hi this is Lisa. Thanks so much for joining us tonight. Please log on to www.autismspeaks.orgfor more information and resources.
 
8:02
  Thanks for great questions, everyone. Please go to our Autism Votes website for more information on our government efforts. 

Stuart