built so that the bank on the discounts of the you can make money by using the local currency. host: do all of the locals use it? caller: most of them do. it is for those who do not want to see the money going to the walmart headquarters. we want to keep our money locally instead of going out of town. host: thank you for your calls this morning. that will do it for this morning's "washington journal." we will see you tomorrow. [captioning performed by national captioning institute] [captions copyright national cable satellite corp. 2009] . .

q>> by the time lawmakers retun in january, leadership hopes to have many of the major points of disagreement on health care worked out. the house returns january 12 and the senate will be back on january 20. live now on c-span 2, american university as toasting their annual two-week seminar for people working in local, state, and federal campaigns. this event looks ahead to 2010's key races and examined voter

outreach initiatives as well as the boards of polling and survey research in politics. like all the coverage on c-span 2. -- all day coverage of cspan 2. today, a senate hearing on the national debt with the former congressional budget office director, the core controller general and others, the principal debt holders and a possible way to reduce it in coming years. that is 4:10 p.m. eastern europe to spend. >> all this week, a rare glimpse into america's highest court threw unprecedented on the record conversations with 10 supreme court justices. >> quite often, in many of our biggest decisions are ones that the court took that were quite unpopular and the idea that we should yield to what the public protest is is quite foreign to what it means to have a country under the rule of law.

>> chief justice john roberts tonight and john paul stevens, interviews with supreme court justices, 8:00 p.m. eastern on c-span and get your own copy of our original documentary on dvd. it is par un cspan's american icons collection, a three-disc set. it is one of many items available at c-span.org/store. >> tonight, expending broadbent to a underserved areas of the country. -- expanding broadbent 282 underserved areas of the country. >> this thursday, a day of tribute to the u.s. and world leaders including the dali lama, ted kennedy, ronald reagan, walter cronkite, colin powell, and robert byrd. new year's day, a look at what is ahead for the new year. russian prime minister vladimir putin discusses his future from his annual call-in program. austan goolsbee on the global

economy. the creator of the segue and a founder of "a guitar hero." plus, the art of political cartooning. about one in every 110 children have autism. that according to the latest estimate from the centers for disease control and prevention. the study was based on medical and school records of nearly 2800 children throughout the the national institute of mental health testified over the summer. other witnesses include the parents of autistic children. this is about two hours and 15 minutes. today's discussion is about autism.

we don't know what causes this disorder. most researchers agree there is a general component in some cases. every discovery seems to raise more questions as it now looks at autism as not having one genetic cause but many. we still don't know what the z%tiggering mechanisms are. many experts suspect environmental factors may be at play. we still don't know what they are exactly or if they take effect during a child's first few months or years or maybe during gestation peri. behavioral interventions help it started early but we are aware near a cure at all. the number of people with autism continues to grow at the rate of incidence growing every day. this subcommittee has taken a strong interest in autism in recent years but we held a

2007 and the appropriations bill that was approved last week includes a range of autism outreach and education, surveillance, medical research, and the inter-agency coordinating committee. the bill also includes $40 million for a new program to help students with intellectual disabilities make the transition to college and complete their post-secondary education. we have an outstanding panel of witnesses today to examine what it is and from many different perspectives. research, treatment, interventions, and another problem that has not received enough attention to date, how to address the needs of the growing population of adults with autism.

let me thank all the witnesses for coming here today. we we have two panels for the first panel is dr. thomas insul. we have covered all the aspects that we need to cover on autism with these two panels and first we will open up with dr. thomas insul, the director of mental health at nih. he has been here many times. as with you and with all the people testifying this morning,

your statements will be made a part of dark record in their entirety. we ask you to go ahead and proceed as you so desire. >> thank you, mr. chairman. it's a real pleasure and honor to be here with the other panelists i know this is a very busy time for you and your colleagues. we greatly appreciate you taking time in the middle of the summer before recess to hear about the latest research and the latest challenge as with autism. my brief is to get to a quick update on research since we last met which was a little more than two years ago. this has been an extraordinary time. with lots of the extraordinary progress. we will try to review that. the testimony i hope will be submitted for the record rather than just reading it, i thought i would take to quickly approve

three questions. what do we know at this point? what do we need? what are we doing? i will try to summarize those quickly to get to on track. :let me make sure we are on te same page in what we are talking about it autism by definition starts by age 3. we're talking about three very different kinds of symptoms that characterize autism, reduced social behavior, abnormal language, and repetitive restrictive behavior's that often are called steroetopies and that many other names. many children with autism, with additional complicating features. i listed a few of them here. some 20% - 30% will have a seizure disorder that can be part of the autism. intellectual disability of the various sorts -- we have many families were concerned about

gastrointestinal problems of many different about 10% of children who have an autism label have bases or of appearances, we call that dysmorphic. up to 20% they have regression. while everybody make regressed to some degree, there are children who seem to develop quite well for the first 80 months and then will clearly lose language, lose function. -- first 18 months. understanding these complicated features and the fact this is such a heterogeneous in the room -- syndrome is that we talk about autisms. we think of this as many different disorders. we are prisoners of our own language by thinking about it as a single syndrome. the term that has now been most widely accepted and you'll hear about this morning is called the autism spectrum.

that means that we're talking about a range within the syndrome from those children who really have very limited function and often have no language whatsoever, may have severe intellectual disabilities, showed no interest in social interaction, have lots of motor abnormalities, the most common we call hand-flapping, and they have the facial features. these are children who will grow up to be highly successful, some of them. they may have social awkwardness. they may be called geeky or nerdy or something like that. they may be more interested in numbers rather than people and they may be successful and make huge contributions as engineers and computer scientists in areas that will probably not tap into their social or does but allow them to use what they do best which is to be able to think about mechanical, numerical, and

less social aspects of the world. all of those people fit within the spectrum. as you hear the debate about what is available and what treatments are and what the causes are, you have to remember that we are talking about this tremendous diversity within the spectrum. let's dive into what we actually know and what we have learned in the last couple of years that will be important for us in thinking about this as we go forward. first of all, there is wide recognition that this is a developmental brain disorder. we don't know yet where the bread or what in the brain or when in the brain things go off track. the most recent research would suggest that what we are talking about is not a specific leeson in a particular area. it may be more likely what we call a synaptic disorder. is a problem of brain connections. that may be very diffuse and it

is quite possible that the reason you see problems in language and problems in social interaction is that those are functions which require the greatest number of synapses. they are unable -- they -- you cannot process information as quickly as you need to. or if you process it to quickly, you will see deficit. s in those kinds of functions. the greatest degree of progress has been genetics and that is not surprising. that is true in almost every area of medicine in the last three or four years. we are seeing an explosion of information from the genomics . benin it has not deliver the cures were looking for yet polished it helps us to understand more about this. two years ago i talked to you about how we think to know it would be a portrait at that point, we would have said is important because we know a

couple of percent of the children who present with autism have recognized syndromes, rett syndrome and others, these are single gene mutations in which perhaps 50% of the children, maybe more, have an diagnosis of autism as well. we have discovered a range of other rare but apparently highly significant nutations that are in the form of structural lesions within the genome that also seemed to contribute. two years ago, i might have said may be 5% of any population of children with autism would have one of the syndrome, i think now we can see that number will be considerably higher, perhaps more than 10% per we don't have names for all the central spot we have in the last couple of years and it is changing almost every two months, there are reports that we're mutations that may explain another 2% of the children who have this disorder. there is clearly a genetic

factor atxo work here that does not explain all of autism. we still need to learn a lot more about how genes and environment interact and there will be lot more research on that in the future. that is clearly an important area of progress. we spoke about this two years ago -- as you said in your opening remarks, behavioral interventions are helpful. they are especially helpful when their started early. you'll hear more about this from other panelists. the issue here is making sure that the best behavioral interventions are available to the people who need them. we're not just talking about children but also children in transition to adulthood and adults themselves. these do work but they are not always available and they are not always paid for it at least not paid for through insurance. we need to have a conversation later this morning about how that will happen. i would also recommend that you might want to ask dr. dawson

about the impact of behavioral intervention pared some of her work in this area is really setting a new bar for help for these behavioral interventions will go if they are done early. finally, the issue that you brought up in your opening remarks and i know it is one that is of great concern to you specifically is the increase in prevalence. the centers for disease control and prevention and now reports from 2007 a rate of about one in 150 children, eight year-old have been given a diagnosis on the autism specter. -- spectrum. it is true that is about a 10- fold increase over the numbers coming from the cdc from the 1992-1993 period. the prevalence of great interest to many of us. i want to caution you that a

change in prevalence is not unique to what is a very we have seen a 40-fold increase in the pulp bipolar disorder and a greater increase in attention deficit hyperactivity disorder in children. this kind of a change is not unique to autism. it is certainly one that deserves our attention and we have to remember the difference between prevalence which can be affected by ascertaining, by chance and diagnosis, and the difference in incidents which we don't have right now could evidence there is a true increase in incidents. bubbwe need to fill in the gapsf what we do not know. we need to understand more about the risk architecture of the

whole spectrum. genes are important, environmental factors will be important, and most important will be how they interact. that is not unique to autism. it is true for asthma and many other areas of development. we want to know about molecular targets because that is what we're new therapies will come from and they have begun to emerge. we also want to understand the heterogenaiety. we want to detect the disorder much earlier. we know that brain disorders, behavior is one of the last features to change. that is true for alzheimer's, that is true for parkinson's, that is true for huntington's, and it would be important to note upstream by having a bio- marker to detect risk and attacked the disorder much earlier. we want to have interfacings -- interventions that are more affected. they are expensive, extensive,

they take a long time to work and does not where we want to be at the end of the day. we want to offer much more than just behavioral interventions. we want to know which treatments will work best for which people. you'll hear a lot about personalized medicine over the next year. we are hoping that the new nih director will be confirmed by the full senate this week. should that be the case, you will hear from him the high priority put on personalized medicine. that is something we will be for autism as much as cancer and heart disease and diabetes. i want to point your attention to an issue that is not on the research agenda but needs to be on the social policy agenda. as you mentioned, we have a whole wave of children with autism who will soon be adults with autism. how we make sure that they have access to services and take care of the transition to independence and the coverage for the different kinds of care they need deserves urgent

attention from this committee and from others who make policy. finally, let's talk about what we are doing. this can be summed up quickly through the work of the interagency autism coordinating agency. we have a plan which was released in january of this year. that provides a whole range of activity that we hope to be able to invest in so we can get some of the answers to what we need. we have an extraordinary opportunity now. when we first about this plan in january, the comment we heard was," this is a great road map but is there any gas in the car?" what happened soon after that was the opportunity to make some very substantial new investments to jump-start this strategic plan politically focusing on the short term objectives. we hope within the next six

weeks to be able to announce publicly the large number of grants that have been funded through the american recovery and reinvestment act. this includes the special rfa threw five institutes to support new what is a resort to the tune of about $60 million but also a large monitor a challenge grants and grant opportunity awards that will be announced before september 30 of this year. we have tried to jump start much of this project by creating a data base which will be essentially a in a meeting ground for scientists around the world to share data and share the tools that are necessary to accelerate progress in this area. as you will see, there were six questions in the plan that guided the efforts, research,

and to help us see what the most important issues are. the iacc which was charged through the combating autism act of 2006 includes public and federal members. these questions really came out of a very rich discussion about what it is it that families and people themselves of the autism spectrum most are looking for. we have taken each of these tomorrow we have come up with a summary of what we know and what we need for these six questions. we have no short-term and long- term objectives that are big contrast to recovery act -- that are being address through funding at the i will finish with a vision statement. this thoughts about what we are trying to do as we move forward and that is to inspire research that will profoundly improved health and well-being of every person on the spectrum across the life span. i cannot emphasize enough the

importance of attention to adults and to become adults with autism. this plan will not only provide the road map for research but also set the standard for public-private cooperation and for engaging the broad community who will be so invested in trying to make sure we expedite research progress. with that, i will make one final comment -- i know you -- thank you for many things you have done for autism and four n i h and for many of the other issues you deal with. i would like to send a personal thank-you for giving us ellen marie who will join hhs reset very soon. this was a lot to give up but for those of us that hs, ellen murray is a delightful gift.

thank you, sir. >> thank you very much. >> i am pleased to join you at this hearing to thank our witnesses who have come to share with us their experiences and thoughts about what we can do to more effectively deal with the challenge of autism. we have had hearings before. it is important for us to continue our efforts to stay up- to-date. we need to join forces with the victims and their families to help make sure we tramp and do not let the victims and their families down. we want to support the cause. thank you for being here to leave it off. >> thank you. >> thank you for your leadership. i am looking at the list of people on the committee. our interest is in research and finding causes b, which

hopefully will lead to prevention and cure it we are also interested in early intervention programs. do you have enough expertise on this panel in terms of looking at that aspect? what are the effect of early intervention programs that we can find and work on? >>on the iacc specifically? we bring in the expertise. we have to update the plan every year by bringing in the experts in all areas we are concerned with. we have heard about both ends of the spectrum. the early detection and early intervention, we you like to use the term pre-emption when we can. this is a place where it needs a big push and the other end of the spectrum is adults on the spectrum who need a lot more in the way of interventions. >

>> which treatments and intervention to will help? this interagency group, you are actively looking at different interventions and try to find out which ones work best? are you also promoting different types of interventions? are you instigating different types of early interventions to track them and see what which ones work the best? >> the first thing we did was to do a portfolio analysis. this was unprecedented. we asked not only an ihl and cdc and the department of education and all federal players including the department of defense that invests in this terrible also all the private groups which are very substantial players for autism.

they are putting in significant amounts of research dollars. for the first time, everybody has shared their information about every grant they fund, how much they are put into it and we were able to use that to map onto these six questions and say what is missing. the place where we look like we are underfunded or under invested across the six questions is the area of intervention per how we fill them? we bring the experts on an annual basis to tell us what the needs are but the opportunities. what can we do and what is hot right now in terms of techniques or things that are going on and other areas in madison? the meeting this year will be on september 30 and october 1. we did a previous one in january of 2008. we used four days to hear from a broad panel of experts. to not only your typical

academic grantse that you hear from but family members who may have had an interesting experience they think we should hear about. we are bringing in clinicians' as well who may be trying things that we don't know very much about. we are trying to pro as broad a net as possible to mature because all of the best ideas on to the table before we decide what we want to recommend for nih and cdc and the dod and others to look at for funding. >> we are talking about applied behavior therapy being successful? hourly and age can you start that -- how early an age could start that and do we know what age you to start at that? >> i will duck that question because the world's expert on that is sitting right behind me. you'll talk to heard a few minutes, dr. dawson, and i don't

want to put her on the spot but she has just completed the landmark study on just that question. i would love to steal the thunder but because she is a friend and i don't want to alienate her, it would be better for you to hear from her. >> you will hear a lot of talk today as i hear about this issue of vaccines and what is a very tenuous summarized the state of the science regarding that issue? >> i can tell you what we know scientifically and that is that there is no question from the community there are environmental factors at work. some aspects of the environment is going to be interacting with genetics to make children and maybe even a unborn children vulnerable. it may be that these are prenatal environmental factors. the only factor that has been export at great detail would be

vaccines. part of that has to do with increasing number of vaccines which have gone up over the last three years or so i made a slight to even see what that looks like. there has been a striking increase from 1900 to about 2009. there are more vaccines that are now in the recommended schedule. there are more injections and perhaps even more injections per visit that are possible currently. it is also important for you to realize that while the number of vaccines have increased, the quality of the vaccines have changed in the same time. if you look at the number of antigens that go into these vaccines, although it doesn't show it here, 2000 and 2008, the amount of protein that goes into the full group of vaccines

that children are receiving is less than they were when you were getting a single shot in 1900 the vaccines are far more refined, far more targeted, they look very different than they would have even when your children would have been vaccinated in the 1970's and before. does not quite comparing apples and apples when you look at this change over time. the research has been focused on vaccines has association with autism and has been epidemiological research. up until this point, i believe there has been a total of 16 studies involving hundreds of thousands of children literally, and there is no evidence at this point of any association between vaccines, the number of vaccines, the kind of vaccines and the increase or the particular vulnerability to

autism. >> what i don't understand is how you could have a study involving hundreds of thousands of children because they are all getting the same number of vaccines. i have a different charge from the center of disease control and prevention. it shows that in 1983 the maximum number of vaccine doses administered before age two was eight. in 2009, there is a minimum of 21, maximum of 29, and from everything i can ascertain, it is more closer to 29. we have gone from eight in 1983 to 29 this year. before the age of 12. most pediatricians do that.

how would you find a group that does not get those? >> it is not -- the eight are not the same as 29 bird look of a number of additives that are present in 1983 versus what is present in the vaccines that a child would receive in 2008. there is a striking decrease these are not the same formulations. they are not the same kinds of vaccines. we are talking about while the numbers have gone up, there is a profound reduction in the amount of protein and a number of antigens. >> some of these vaccines weren't around in 1980. we have a number of them here -- some of these weren't even a round. they were around in 1980. >> right, and the vaccines that were round in 1980 have been changed. they are more for -- far more

refined. they may have the same names but the formulation has been greatly refined. that is how you get these kind of changes. >> i get confused when we get into this area. i want to focus on the number of vaccines and the fact that they are all put together, many times, before the age of 12. two. just the total number has gone of apparent i don't know of any studies that would compare a cohort of children from 0 to age 2 that did not get these shots and the incidence of autism and those that did receive 29 vaccines and did come down with autism. i don't know of any study out there that has done this. >> we have had a discussion within the iacc about this issue about could we mount a study of

all vaccinated vs un vaccinated children. we do not have vaccine expertise on the committee. we decided to consult the national contain -- national vaccine advisory committee. they report to the secretary and we want to get their expertise because they do have it. we met about one month ago to have this conversation. before meeting with them, we sent them the question, saying," has there been such a study?" their first response back to us was that it has not been done. they did not think it was feasible to do they did not think it was ethical. they have real concerns about the ethics of randomizing a group of children to not receiving vaccines started they were particularly concerned about the risk involved in not vaccinate a large number of children per year with a large number of children for such a

study. >> so, we really can't tell that it. . i know people who are not letting their children get those numbers of vaccines. these people are highly educated, professional people. they have decided they will stretch them out over a long period of time for the woman given to them before the age of two, maybe by the age of five or six. i'm a lot of that is happening out there. many pediatricians will not treat a child if in fact they are not getting these immunizations. they tell parents that if they don't agree to the vaccination schedule, they cannot be a patient. i know a lot of people who are not having their kids vaccinator. i don't know the ramifications of that i don't advise that but i know that is happening. the problem is we don't know.

we don't know if 29 vaccinations, immunizations by the age of 12 to have been a fa2 do have in effect. >> this is a topic that has come up. it is a highly-charged a topic. people are convinced that vaccines are the problem and some are not. there are both ends of the spectrum but we also hear from many families who have had a child with autism and they are wondering what they should do about their next child. that is often the question that is on the table because they don't know who to believe and what to listen to. the group of people who feel there really is an issue here and we should be concerned because there is a relationship between vaccines and autism point to the numbers that you point to, a large increase, and

they say there have been 16 studies and all 16 studies demonstrate no relationship. however, those are all epidemiological study spurred you cannot rule out the possibility that there is a small signal there that might have been missed. on the other side of the coin, we are hearing from other people and not a scientist but family members of this committee who are saying, "enough already. if there is an environmental factor at play, we have spent a lot of money doing these studies and nothing has shown up on this question. maybe we don't need to turn that rock over a 17th time, let's move on and look at something bad is more likely to shed light on what could be an important factor in the increasing prevalence or risk for autism." that is what we are hearing. we are trying to balance both of those points of view and try to make sure there is information available for people who are

most concerned about what they should do with their next child >> that is true. we have boat. th. how we help people right now who are dealing with children of their own? we have to focus on those early intervention programs. we'll get to that in the next panel. anything you wanted to talk about? >> i want to join you in welcoming dr. inseld to the hearing and recall that we have had hearings in the past and we have had efforts in the past to try to develop a body of information that will help us identify better ways of dealing with autism, what are the causes? what are the possible changes in environmental or nutrition,

health care, that we can turn to for help? all this will help to deal with the sorrow and challenges and difficulties that autism brings to our society. i can recall back in mississippi, join with families there to help raise money, have benefit of vans, go on television, invite people to attend and contribute and the like. some of the experiences that i had banned, observing the children who were victims of autism and talking with families and getting to know no more about it, really make a big impact on me and how challenging this situation really is. my heart goes out to those families who are dealing with it. i want to be here today to support the effort to identify how government can be more helpful. what are the other possible

causes for autism? what are the things that we can do and continue to work and not give up. many people have invested time and effort and research and dollars, personal energies to cope with the situation ve. is there hope? have we discovered things and learn things over the last several years that give us any hope we are making progress? >> absolutely, there is always hope but more than that, there is very rapid progress. this next period of time will be even more extraordinary. we are ramping up the investments of very rapidly. in 2008, our budget brought to some research at nih went up 25%. in 2009, it will go up much,

much more than that because we are seeing this recovery act effort. we have put money specifically into an autism request for application into the recovery act. the only disease-specific request in the recovery act from and i age for this year. we have lots of other things going on with the $10.4 billion but this is the one that has a disease name on it and because we realized that there is an urgent need and there is a tremendous opportunity right now for progress toward we have the tools we need we can start to move quickly. we want to do that over the next two years. >> thank you very much for your efforts and being involved as the director of the institute for mental health. we appreciate you being here this morning and helping us fully understand the challenges we have ahead. >> thank you for your interest and support.

>> would like to call our second panel -- we would like to call our said improper if you can stay, we would like you to stay. >> i would be happy to stay. i want to hear the c-panelists. >> do you want to say appeared? >> will do. >> you don't have to mow. you can stay right there. [laughter] dr. geraldine dawson, mr. joshua cobbs, miss nicole aikens boyd, david miller, and dana halbersonn. thank you all for being here. some of you have come a great distance.

your statements will be made a part of the record in their entirety and if you can summarize five minutes or so, i would appreciate it very much. we'll start from left to right. dr. geraldine dawson, the chief science officer for autism speaks. she was a professor of psychology and psychiatry at the university of washington. she is the founding director of the university's autism center. she received her ph.d. from the university of washington. thank you very much an please proceed. >> good morning, mr. chairman. i want to thank you for inviting me. i am very ironed to appear before the subcommittee. i want to thank the committee members and you for your leadership and -- in providing full funding for it become bidding -- combating what is

impact. also for your appropriations bill. this year, more children will be diagnosed with autism then with aids, diabetes, and cancer combined. autism research is still significantly underfunded despite greater public and congressional awareness. for example, leukemia affects one in 25,000 people but receives research funding for $310 million annually. pediatric aids affects one in 8000 children. ts its funding is tutored $55 million per year per it autism affects one in 150 individuals and yet nih funding for fiscal 2009 is estimated to be $122 million. most scientists agree that autism is caused by a combination of both genetic risk factors and environmental factors.

we have discovered some of the autism rest jeans. we still know very little about the role of the embargo and how it interacts with these genes. we have come to understand that autism is not one disease but many different diseases that as many different causes and each costs will likely only explain a minority of cases per piece by piece, we must discover each of these causes so that effective

are effective for some individuals, most individuals with autism suffer without relief from the autism itself and a wide range of medical conditions such as sleep disorders, gastrointestinal problems, and epilepsy. very few clinical trials have been conducted that address these medical conditions. virtually no cost effective studies have been conducted to determine which treatments are most affected. parents are left to sort with

confusing and often inaccurate information about the various treatment options and claims per it clinicians are often at a loss in helping parents to make evidence-based treatment decisions for this kavanagh system -- this gap must be filled. adult care accounts for the bulk of the billions of dollars that is spent annually for caring with individuals with autism in the united states for it on like other health conditions, we have limited information about autism health care utilization, barriers to access, health care disparities in the u.s., or cost-effective as models. over the past two years, your subcommittee and you have been responding to the challenge of autism with resources. this is beginning a midlevel fight against is very challenging disorder. more is needed to better

understand the order, diagnose it, and better treat those individuals who have it. i want to end by thanking you for your time, your commitment, and for leadership. i am very happy to entertain any questions that you may have. >> thank you parted before we go on, i want to recognize my good friend and colleague from pennsylvania with whom i have shared the gavel over the past 20 years. senator specter is a member of the judiciary committee durin. he is on the floor now with the supreme court nomination. >> thank you for yielding. we are taking up the confirmation hearings of judge sotomayor for supreme court and by and do on the floor.

i want to thank you, mr. chairman, and ranking member cochran for having this is airing of this very important subject and think the witnesses for coming in. autism is a heartbreaking element. of the many issues we have to face, among the toughest is talking to parents who have children who suffer from autism. there is a question of doing more. senator a harkin and senator cochran and i have worked hard on funding for the national institutes of health. for a decade, we were able to raise funding from $12 million - $30 billion. regrettably, that is not enough.

i know that funding for autism was slightly under $52 million in 2000 and up to 122 built -- million dollars now. the cdc spending has increased from a little over $1 million to a little over $22 million. we have been successful in getting into the stimulus package, a $10 million, as you doubtless know. it is my projection that some of that will be going to autism. these funding levels were set by nih in order to avoid politicization. i think there should be a bigger share for autism. we are pushing to make that happen. we're working on comprehensive

health care reform and we are trying to get $10 billion added as a base to start with. that would give us a better opportunity to do more on this very, very important element. i want to express those views today. staff will be here to follow your testimony and we will have a chance to review with gary we appreciate you coming in and you have our schurz's that we will do everything we can on this very important matter. thank you, mr. chairman. >> thank you, senator specter. now, we will go to mr. cobbs. if i remember right, you are from ottawa? near sioux city? -- you are from iowa? your wife is with you? >> she is in the audience for ?

>> yes. you weren't you here at our last year? >> i was. >> you have been ball than the tele-health program with your young boy, noah? >> that's right. >> i am interested in what is happening last couple of years, please proceed. >> good morning mr. chairman. my name is josh cobbs. i'm a parent of a child with autism for it it has been over seven years trying to better the lives of individuals and families affected by autism through insurance and education reforms. when i was left in front of this distinguished committee, i spoke of the successful and cost efficient services myself received using tele-health technology.

this came from professionals in florida which was federal sponsored national research project rate we are one of 15 families that participated in this demonstration across the nation. in this model, after a brief& phase of face-to-face training which is crucial to build a therapeutic relationship, we relate to professionals by an interactive video systems that enable live tree, consultation and support directly into our home, when and where we needed it. through this model, we receive professional support in teaching our some language, life skills, and overall improving his quality of life. one of the main components of the study was the reduction in our family stress preparing us as frontline teachers and therapists. through training and education, we have a better understanding of our child condition and those things we could do to bring to bear to improve his life. not only did improve his life but it had an impact on my love

and my family as well. we showed a dramatic reduction in stress as a family and became more focused as a family unit. i will never forget the call from my wife saying, "you'll never guess what are some dead. he went party on the big boy ipod." -- p he otty on the big boy potty." through our connections and access to certify professionals, we were given the right to skills and were able to achieve what previously was unobtainable. our experience was chronicled in a two-part series filmed by the abc affiliate in sioux city, iowa. we have copies of the footage that we would like to share with the committee and it can also be viewed www.celestefounda

tion.org. the treatment does not conform to a clinic hours. we were able to access the professionals when we needed and it made all the difference. just having the support of my home allowed natural interaction for my son and allow the professional to see# o the behaviors as they occurred. as chairperson of the iowa autism council, i have the opportunity to speak with family members within the autism community to learn there in a separate from my perspective and my experience, these families are desperately in need of services. as parents a search on live for appropriate health services for their children, they are confronted with an array of on validated technologies and various individuals claiming expertise in treatment. there are no safeguards in place to protect vulnerable parents and children. from anywhere in the world, anyone with a personal computer

can offer video services termed as advice. under these circumstances, any individual or group can claim qualifications in helping children and parents with autism. families are experiencing the emotional burden of treating a job with this bill is but they have the financial burden of paying for this treatment with no assurance as to the quality of care provided. when individuals or organizations that are collecting fees for services can distance themselves, what can families expect for recourse? the reality of standard setting is evident because without standards, there can be no reimbursement while the method and systems are cost-effective, without proper reimbursement model, they remain on untenable for most parents. -- un of tenable for most parents. -- unobatainable for most

parents. the current wave of statewide health insurance requirements and to provide reimbursements for individuals with autism does not have well-defined standards for tele-health reimbursements. families and children are not granted access to effective care as a result i know this committee has recognized the need to assess "best practices and professional criteria status and make recommendations concerning national standards for tele-health reimbursement which encourages this technology." i commend the committee for such injuries owners that this momentum continued. in closing, you may be wondering how my son is doing today. he is now 9 years old. my family is still familytele- health technology.

it is important to note that as my son grows, his treatment program continues to grow and addressed his ever-evolving needs. we continue to use this treatment because it has been effective for our family. it has been so effective that now my 8-year-old daughter has become a mini-therapist. my son continues in the role of student and teacher to us all. indeed, his future is bright. i would like to thank you for your time and the opportunity to share our story and the stories thousands of families. thank you. .

>> i want to thank the committee. in 2005, our family was living in texas when my husband completed his surgical fellowship. my child developed progress of autism. almost overnight, he digressed from using words and sentences in two languages and well above his peers to someone who who lost almost all of their skill

sets. it was as though a tornado had hit airlines. -- had hit our lives. my son began a vigorous program that has continued after our move back to mississippi. we can see progress and we're cautiously optimistic about the future. he is quite verbal and his motor skills have improved. his medical condition is always tenuous. simple viruses will turn high- functioning children into a low- functioning child in a matter of hours. today he will attend his kindergarten open house in mississippi. he will attend a regular education class and have some assistance. as the class of 2022 starts

kindergarten, schools look very different. 20 years ago, fayed would have been -- he would have been the only child with autism. however, his kindergarten class of roughly 200 students will of six children diagnosed with autism spectrum. if you do the math, and is roughly one in 34. in mississippi, we know that children typically do not get diagnosed until much later. that number is probably going to go higher. this is a high number compared to what we see in national statistics. i think you'll see this number replicated in kindergartens throughout this country. we know that the rates of autism close-up 10 to 17% per year.

can you imagine what autism will look like in this next decade? the medical establishment gives itself a pat on the back saying they're doing a better job diagnosing this. we know there are contributing factors so that the root of autism increases. it does not explain the explosion of boxes and we're seeing in america. we oftentimes see a relationship between pediatricians and family members who believed the autism was caused by vaccines. we see relationships when parents do not accept that there could be multiple causes of the autism. we reached an impasse in trying to help the child. the autism society currently estimates the lifetime cost of

caring for a child with autism is $3.5 million to $5 million. we are looking at facing a $90 billion cost in funding autism. the question we need to ask is, can we afford not to put the money into research and treatment if these are the numbers we're looking at. i am glad you were sitting beside me. the combating autism bill brought great hope to parents. we appreciate your help in passing that. however, we have to move quicker. we have to see the committee look at all aspects and possible causes to autism. we have to see that committee quickly makes some identifiers and look at populations of these children to find out what of the

general pictures that we say, what are some health indicators we see it? it has to be done quicker than we usually operate at government broker c levels. the other thing, i would be remiss in representing the parents if i did not go back to your question, senator harkin. we have to look at the causation with vaccines. dr. bernadine healy, who has testified before this committee many times, has noted there is a dearth of research in truly looking at the vaccine autism connection. there is some very good studies that are yet to be done. i know this committee and this senate does not like to tell the nih have to spend as research

dollars. but i ask that you particularly look at this, particularly when you're confirming a new nih director. i want to give you some optimism. in this classroom, five of the six children have received intensive behavioral therapy. their families have taken two jobs to be able to afford this behavior therapy. that is not often the case in mississippi. with mississippi, the average annual income is less than $35,000 a year. this private intensive behavioral therapy costs around $50,000 a year. it is impossible for many of the constituents back home to

afford the therapy that they know will make a child better. on behalf of those misses sabaeanmississippians, these chi mentioned have received intensive behavioral therapy even at the age at5. they already are requiring less classroom support than they would have. you can see the financial bright spots down a road with this intents a behavioral therapy. so the question i will leave you with is, if we know that we are looking at day $90 billion annual health care cost and we're looking, and i will take the information and we're looking at initial investments around $32,000 a year, and over the child's life, we can see health care returns roughly at

about $2.5 million of health care savings for those children who get this, the question is, can we afford not to make their investment? >> it very profound statement. thank you very much. now we will turn to david miller, a resident of fairfax county, virginia. he co-founded a community college consortium on autism. he received his degree at boston university and has a master's at northeastern. retired from the armed forces. he is the father of two autistic boy is. mr. miller. >> thank you. chairman harkin, thank you very much for holding this hearing. i am board member of northern

virginia community college or recommend -- or represent -- as you indicated, the co-founder of the college consortium, which is comprised of 41 presidents of colleges fromthe have the highest incidence of autism in the country. he is an active member of for a consortium, as is the president of heinz college, the largest community college in mississippi. both of these leaders could not be here today because of previous a scheduled board meetings. we do have some college presidents that are here. the first one is behind me, he is determined of taft college and is the chairman of our consortium. the second president we have is dr. wayne burton, the president

of north shore community college based in massachusetts. we have steve, the chairman of passaic county community college. we have one of the foremost post secondary programs in the country for students with autism. if you look at my testimony, the summary of the results that taft has rachieved, it is astounding. we aspire to the programs as effective as the taft program. this hearing has a particular poignancy to me because i'm the father of all autistic boys, identical twins. their sister is the youngest of these triplets. she is here today.

she is a happy, healthy 7-year- old princess. i know you're back there somewhere. my comments are those of a parent who is concerned about the long-term ability of my children to live independently and to develop a career track that will enable them to support themselves financially while meeting and overcoming the challenges that we have never faced in our lives. i am not an educator. i am not a therapist in the field, like jeff ross. i am not as well read as my wife is. in terms of the nocturnal tendencies of an autistic child, my wife should be seated here.

i would like to -- people talk about takeaways. i will go to my testimony in a moment. and when you want to further the activities, there are two takeaways. my kids are here. they are here to stay. what we're doing in terms of research is excellent. we need to have all of that good stuff. it is tremendous. my kids are here. all panelists who have autistic kids are here. the second thing i find more and more is, what is the game plan here? what are we looking towards? it is true most of these kids are below the age of 17. more and more, the kids are entering middle school and high school. it will be adults. it is a critical question that we have to consider.

we have to keep that objective in mind. we are seeing our first beginnings of autistic kids on our campus. you're chairman, chairman kennedy, gets it. we have had a number of discussions. he has called this a tsunami. he said we're not investing in the infrastructure to do with this tsunami. a bill authorizes five-year grants in support of a model program to promote the successful transition of students with intellectual disabilities. there is no specific amount of the rise. i have a letter. i am sure you have seen it. their request $35 million for 2010 to fund these types of programs.

as stated, the vast majority of autistic students are currently at community colleges and will attend community colleges because we have open enrollment policies. they reach age 21 and they come to our campuses. we have no effective programs to deal with these children. they come to our campuses and in role in normal academic courses. there soon academically dismissed. they have no further contact with respect to job training program and. the have no further or additional educational opportunities. so what happens to these kids after that? that is what senator and kennedy is focused on. schools like kirkwood will tell you these are expensive programs. their run $30,000.

there are limited by law to approximately $3,000 as far as tuition. they do not have access to any further funding. they just do not have the financial resources to develop programs to assist these students. i think one thing, and i realize i am over my time. these funds are essentially economic development funds. stimulus funds. they are being focused by community colleges. again, we appreciate the fact that you see fit to put approximate $15 million towards this program. we hope that you will walk away at least without minimum amounts of money. >> thank you very much, mr. miller. now miss dana halverson from iowa.

i should have looked at that before i said it. that little clip could be misinterpreted. she lives on a farm in iowa. well up in northwest iowa. her daughter robin was diagnosed with autism when she was 15 months old. she has a degree from the university of minnesota. welcome. please proceed. >> she was diagnosed a little over age 3. she regressed. >> would you punched the button? thank you. go ahead, halverson. >> thank you, mr. chairman, for this opportunity to encourage

more thought and action on autism. my name is dana halverson. my days are filled from very early to very light with challenges of my three children. i have one daughter who was diagnosed over age 3 with autism and mental retardation. she was given the label of autism, it fails to describe the nature of her disorder. i discovered her condition. over the next several years, we confirm multiple medical diagnoses, multiple food allergies, growth hormone deficiencies, and to grant discretiimmune dysfunction, andy metal toxicity. we have only been able to help

problem by struggling to travel all over the country, spending thousands of dollars on tests and clinical visits, mostly not covered by insurance. the list of diagnosis she carries is long for a young child. this belies her medical problem. people expect her to be able to respond to them and share with them. robin has come a long way but still has difficulties. i know of trojan who of fully recovered with proper therapy. -- i know of the children who have fully recovered with proper therapy. we hope that someday she can live a normal life. once we learned of her medical issues, and she began to improve. these symptoms we see in robyn are not psychiatric in origin,

needing only psychological therapy. autism is a disorder with behavioral characteristics. many families hesitate to use the word "autozone." we call it the a word. -- many families hesitate to use the word "autism." i have discussed causes and treatments. no action has been taken. more children have suffered and more families have been destroyed. the financial burden will fall to their parents and also to taxpayers as some of the older children cannot work and must collect disability checks.

care will cost millions of dollars. i have to accept new york invitation to set the record straight. you cannot address the a-word without addressing of a-words. we have the sickest generation of children in 60 years. one in six children has some form of narrow developmental delay. alice huang 150 have often is -- at least once 150 have autism. this is essential to obtaining answers. agencies charged with protecting the health of our children suffer from conflicts of interest. the need to be held accountable. it is difficult to sit at this table and tell you you haven't lied to, the would have all been lied to. mercury levels exceeding eps say

it levels were in robin's vaccines while pregnant and after her birth. the industry material safety data streets identify the chemicals as follows. the mercury component has caused nervous system effects in experimental animals including mild to severe retardation and motor impairment. you do not need to take my word for. a doctor and a former associate director of the national toxicology program is with me today. he has on many occasions shared his views of the danger these chemicals have cost two children. the number of vaccines has risen

from san to 49. those who create vaccines often said at the table and reap the dollars of the vaccines being used. where else in the world to see the scenario of no accountability and conflict of interest? elected officials and very few are doing it. we need transparency, honest communication, and as you suggested, a valid, unbiased study of vaccinated versus on vaccinated population. congress scrambled to hold hearings about steroids while thousands of children have continued to be injected with the vaccines containing a known neurotoxin. we all know some children are injured by vaccines.

their access to compensation is up against obstacles. i do not have time to describe the necessary reform, please take a look at the statute of limitations of problems facing these families. heavy metals should not be injected into people, especially babies and young children and other people susceptible. this encompasses more than concerns about mercury. mercury is so highly toxic it is the big gorilla in the living room. in own tax0.6 micrograms to harm human tissue. it continues to be used in some vaccines including flu shots. that is a fact.

it is damaging. it is also a fact that has been documented, replicated, and ignored. it is in front of gospel we pretend not to see. those in power have not listened and acted to protect the health and future of the children of this nation and instead have protected industry and government. my hope is for action. can we afford this continue inaction? thank you for listening and allow me to share my concerns. as a return to my iowa farm, i will reflect upon will my daughter and family have lost, and many other mothers and fathers whose hopes and dreams have been crushed with his chronic illness. we will continue to hope for action. our children and our future depends on you. >> think you're much, mrs. --

thank you very much, mrs. halverson. dr. dawson, i will start with you. you mentioned that virtually no comparative effective treatments for autism. this is something we have to focus on. we have to do the research. as mrs. halverson pointed out, we're in the here and now. families are struggling. we're facing this whole generation growing up and what is going to happen to them as adults. we have to focus on the most effective treatments we have now. this committee provided over $1 billion in the recent recovery act. dr. insel mentioned that earlier. $1.1 billion, up to be exact.

if you cannot, we do not say exactly where to put them. but do know if any of those dollars will be spent on autism? ion included autism as one of the conditions that should be included. have you been watching or do you have any involvement in trying to see that some of these studies are done on early intervention programs? >> i am aware of the focus by the agency for health care equality on a comparative effectiveness. we have some recommendations in terms of the questions that need to be asked. i think it is so critical that parents have a sense of whether one thing is effective more than another treatment. the other aspect of comparative effectiveness has to do with

method of service delivery. so we know now is that when children receive care, they often receive it by seven professionals who individual work with the child. the parents themselves have to act as the case coordinator. there are other models for how to work with a child with autism which involves a multi disciplinary team which has a financial aspect the coast to coordinating care. we feel this model is much more effective. that is another example of another study that needs to be done. look at different models of service delivery to find out what ultimately is most cost- effective. the other question has to do with the issue of personalized medicine. what kinds of treatments work for which kinds of individuals? we know that autism is not going

to be a one size fits all kind of treatment approach. so we need to understand the effectiveness of understanding the underlying bio markers whether we're looking at medical conditions or genetic conditions, metabolic conditions and how these can direct treatment approaches. we are at a very early stage in understanding the question of which treatment worked best for which individuals. until we do that, parents go on to the internet, they seek out answers themselves, and often act on non evidence-based decisions. >> pepper rings me to mr. thompso -- that brings me to mr. cobbs. i got interested in a tele-help using some time ago. we are in a rural state and we

don't have a lot of access that people in urban areas have. i became more interested and more tunes in on the issue of autism a few years ago. a lot of families that have young children that are diagnosed with autism, they do not know what to do. there are some residential programs for older kids come up for a transitional things. correct me if i'm wrong. you can jump in on this, too. i think there is some pretty good evidence that the earlier you get to these kids and provide them with supportive services, interventions by trained people that know what they're doing, that there really do get over a lot of these

things. they get over the problems they have had. the earlier you get to them, the more effective if it is. how did you get to them early if they're living in oxford, mississippi, or someplace like that? so we have some money in this project, of looking at tele- help and how you can get together with a group of professionals early on and then with high-speed internet. it's like you are right there. you get that 24/7. you have been on this -- you have been in this experimental program for three years. >> we have continued the studies so we contest the longevity and to show the program can grow with the child. >> have you talked to other people? you're the chairman of the iowa

autism council. i just know about you. have you talked to them about this? >> that is a great question. just this morning we were talking. is an aha moment. it is the light bulb that goes off. if noah is having a great behavior day, we can replicate them. we can start to build on that with applied behavior analysis. if he is having a bad day, it is not because we are in a physician's office. it is because he is in his own home and something has triggered that behavior. immediate response to track down what is causing the behavior. we can get immediate results.

both good and bad. >> the other thing the economic thinking about this, kids with autism, they do not act up or anything went there of the doctor's office. but then you get home and they do. >> in our case, it might be the exact opposite. the informant of a doctor's office could have to much stimulus. you could get the reverse affect. all of a sudden, we have a behavior taking place. therefore, we may have to leave that in farm without properly getting the care. it is a great adjunct peace to a great program. it is also a great way to bring a comprehensive seen together to treat the child in a natural environment. >> are we doing in the studies to show the comparative

effectiveness? or is this something that hopefully, this $1 billion put in there will start to take a look at the. does anybody know that? >> not with respect to the tele- help program that i'm aware of. >> we just completed the tele- help large study. the good news is the recovery act has given us this opportunity to open up the doors for additional work. n we do have some exciting proposals on tele-help for autism specifically that we are hoping we will be able to fund. i think this is the chance to see real progress in this arena. it is not only for the child. this is for the family. that is where some of the big

applications will be. >> miss halverson, i am assuming you're not on this tele-help. >> no. we have hit all aspects. we found out about it biomedical site first and then from a out aboutba. we have used both. -- and then found out about aba. i know a lot of families agree with me. if your child does have these biomedical issues, you are going to get better results using the aba. >> how would you feel as a parent if you access in your own home with your child 24/77 anything that happens with your child, you would have ready access to trained specialists. you would be in constant contact

with them. >> it was not as much of an issue. for me, and the medical care she needs, i can only obtain in a doctor's office. if i'm taking her in -- she has been undergoing intravenous therapy. that is an infusion in their doctor's office. then we do circulation on top of that. that has to be done no matter what. >> i see the difference. i have taken 10 minutes of time. senator cochran. >> thank you. i appreciate you coming to the hearing. as a committee, which tried to tailor programs of support, research that are needed that

will help make positive contributions to solving the problems that you face personally or professionally. is there something that any of you have in mind to suggest -- i know miss halverson talk about financial support and to figure out ways to be more supportive, tangible benefits of some kind, insurance programs that may be the government can help support in terms of cost or premiums or sharing responsibility. it seems to me we have a lot of organic medical disabilities that come within the theambit at of insurance that this insurance is not being helped with. a wonder if you have any thoughts all along those lines. >> i would like to comment on

this notion of early intervention and tell you about the study dr. insel was talking about. this was a study were children began the intervention below 30 months of age. it has been conducted with toddlers with autism. the children work randomized into either standard care in the community or and intensive intervention that focus not only on working directly with the child but also talk of the family how to use intervention strategies so that intervention occurred wiwith the child. it was approximately 25 hours a week of structured intervention. all the tests were done blind.

at the beginning, both groups of toddlers with autism had aciq's in the mentally retarded range. their iq increased to the extent that they were no longer in the medically retarded range. they have better language. many children when from autism to pervasive developmental disorder, a less severe diagnosis. this a two only years and the children were 4 only. it should continue for another year or two. so we know they are in effective. we do not two have things that limit access. financial support for families.

this is essential. it will save us money. it will help families and it will allow individuals to take revenge of some of the programs we have heard about. the second piece is a training for professionals and for parents. many of the interventions that we're developing now are actually teaching of the parent to deveo teach the intervention. they are in normal settings. we need programs such as medicine and we're developing training programs that we're using to train parents and professionals in the united states and around the world. we're working in india and africa and other developing countries to train professionals. insurance coverage and trading

professionals will be absolutely key. then we will get kids on the right trajectory. we need to look to see how we can continue to support people with autism is to become the best citizens they can. >> thank you very much. that is interesting analysis. mr. iss boyd. >> the task force looked at this in mississippi extensively because of the financial situation of many of our parents. they presently do not cover those services. it is out there federally. it needs to now include behavioral services. many of these children are starting to be identified early. i can speak to the success of that. we were in san antonio this summer. i met a child named catalina.

she began behavioral therapy. this child is 04 years old and is absolutely amazing. you would never recognize that she was a child with the spectrum. i saw that working. the other program that has to be looked at is medicaid. states have an option of whether they can give a waiver. i would encourage you to look at that. it is one of the things that could reach out to these families who do not have the finances to do that. the other thing that dr. dawson mentioned is private insurance. there are virtually almost no policies in our state the cover autism therapies. there are none. it does not cover behavioral therapy, and it only covers 20

visits of any type of speech or pt. usually by the first six weeks of the year, you have run through your insurance coverage for your child. that is combined speech and ot. you can see what many of these children are not getting the assistance they need. the visits are costly. those are the things we look at, gaps that needed to be filled in the system. >> i think we should introduce a bill to modernize our laws on medicaid and reimbursement. >> how to people afford to do this? >> they cannot. >> frankly, they cannot. i know we have been working to get insurance in virginia. a number of states have

mandated insurance coverage. it is a fox fall by fox will fight. in virginia, the average income is about $50,000. the average cost of services is about $85,000. the families have to do without. it's been done by state-by-state basis. how you can do some kind of insurance pre-emption would be an ideal way to go. this is an educational issue. it is not a health issue. if you see in two sons, it is a combination problem. >> the other factor that didn't get brought up is the financial stress and what it leads to. the divorce rates and we see this anecdotally. it is a minimum and around 80%.

there is some estimate -- a speaker from california in the group of people she counseled, and her divorce rates were 90%. these are incredible numbers. in mississippi and our region, which two lost parents this year who could no longer handle the stressors of having a child in the program. one was a friend of ours. that is not unique to mississippi. that is things we foresee all around the country. >> thank you. >> i would like to go ahead and piggyback on that statement. the government needs to move rapidly to go ahead and advance great technology is such a tele- help technology. it is easy to go ahead and pass a bill here or there.

in order to make change, we have to have standards and the reimbursement model for applied behavioral analysis and other proven therapies. it is recommended by the surgeon general. private insurance companies typically do not reimburse that for families with autism. >> we do have a unique opportunity with health care reform to address this issue. the house bill does include coverage for behavioral intervention, for autism, as well as aba. i think it is critical that with this opportunity that we are looking at in terms of health care reform that we include this. the payoff in terms of the financial payoff down the road, it is going to be tremendous and will help with the tsunami. the impact on the families will

also be tremendous. it is an opportunity we must not miss for these treatments that we know work and are cost effective. >> we are going to introduce something together. [laughter] we will iron out the details later. >> if i cannot edit from the iacc perspective, as well as someone who has been reading the charts along with the president of the autism society of america. together they have been listening to families about these issues trying to come up with some recommendations. if we can be helpful, i am sure

that group would love to have an audience to give you some ideas. >> thank you. you just mentioned standards. someone mentioned about how you go on the internet and get all kinds of misinformation. you have been on this tele-help for three years now. you're dealing with trained professionals that you work with. you mentioned standards. but talking about setting up those kinds of standards? >> absolutely. it was a comprehensive treatment program that first started with a face-to-face interaction. from this can pretty much pawpaw any internet search and tiepin "tele-help" treatment and their first contacts video to video

which i do not think it is possible to form a pure therapeutic bond and to get to know the child to treat the child. it is disconcerting. ms. dawson touched on this. you'll get a myriad of different treatments, kind of scattered among to things like car advice or things like saying, i will paint your house. it is so sporadic. parents still have a consistent place to make sure they receive consistent quality of care. i encourage you of folks meeting and talking about new treatments. until we get a set of parameters for standards so when parents get treatment, especially over innovative technology, they have the insuranassurance that they l

get a trained person. right now they are not there. >> i just wanted to mention a program that is a wonderful example of a public-private partnership that is beginning to address this issue of standards. is the autism treatment network. this is built on the cystic fibrosis model. it was in the same situation of not getting quality care, no standards for how child should be treated. and so the way in which this model works is it is 15 hospitals that care for children with autism that have come together to both look at quality of care, models of care, as was to develop standards but that can be practiced standards published in journals that physicians can then guide things

like assessments, behavioral interventions, and so forth. so there is no mechanism where this is beginning to be addressed. it is in the early stages. it is funded by autism speaks. >> who works on these? i asked my staff. who is charged the responsibility of coming up with standards that have to be met so we do not have people out there that do not know what they're doing? >> you stumbled onto an interesting issue. it is not unique to autism. we built standards around by a medical interventions that are essentially overseen by the fda. in the broad intervention arena of whichab aba would be part of that, there's not a licensing

body that oversees this in quite the same way. it is a gap. the question is, even in this health care reform discussion, when you're talking about treatments that may not be given in a doctor's office or in one of the 15 hospitals that in falls families to the minister care, 10, 15 hours a week, how does that get reimbursed and how do we set standards for the degree of care and the level of care that is needed to be reimbursed? >> was that rhetorical? [laughter] i cannot answer that question now. >> i am a psychiatrist. [laughter] >> asking probing -- [laughter] >> that is true.

well, again, obviously we have a whole range of interest here and everything from their research into the causes. obviously, there is a lot of talking about vaccines. we had some questions about it. about the number of vaccines and how we set up that kind of a study that ms. boyd -- i think it was misspellms. halverson. i just do not know how to do it. you can see your kids are not getting immunizations because we will put them on a study. if you wanted to determine that, i do not know how you go about doing that. >> one of the reasons i

wanted to bring that up, mr. harkin, there are so many families right now, and this greatly concerns me. i'm a vaccine proponent. i believe and vaccines. i believe there are a great public health achievement that we have ever had. i am a huge proponent of it. what i am concerned about, there are so many families right now that are not vaccinate their children. we do vaccinate our children. there are so many that are not vaccinating right now because of what they perceive as a huge risk. and so i am concerned that n theih and the cdc -- the nih and the cdc and people may have some interest into this. they are doing more harm to

lower the heard immunization rates than anybody that is spilling out there to be concerned about vaccines. there are so many people right now they're choosing not to vaccinate their children. i don't think the population is going to be as difficult as scientists perceive that it is. within the autism community, we see that going in right now. and that concerns many of us who feel vaccines are very important because -- we hear from was all the time come up to us and say, we're not going to vaccinate our kids. having a husband as a medical professional, i work as an attorney in public health. it really concerns me. many of these families that say they will not vaccinate their kids do not have any of the possible health care characteristics that some of us

who did have children had the could've been red flags. they could have been studied. i think that the scientific community can find those people to do that. >> dr. insel. miss halverson. punch the button. >> i do not know how many people you're thinking will need to be included in the study. there is a physician in the chicago area that has a practice of about 35,000 patients and many of them choose not to vaccinate, and their offices and rage is next to nothing. there are populations of people -- and the rate -- the autism rate is next to nothing.

the population with this doctor is very broad based. it is not people from every walk of life. >> i do not know about that. >> let me just be very clear. i am representing what we know about the scientific evidence so far. that is unequivocal. it is a not thecd cdc and nih. multiple studies have looked at this. this has been looked at over and over again. 16 large-scale studies have looked at this. whether you read the studies or listen to the institute of medicine -- >> looking at the connection, the possibility of a connection between the vaccination with without a particular

formulation can be prevalence of autism. whether this is a risk factor. the studies have found no evidence of a connection. we heard that. the looked at the whole broad spectrum and we heard from the injury cord. they said there is not plausibility here. >> i mentioned getting a study done of the number of vaccines, the number of vaccines in the first two years of life compared to what was 20 or 30 years ago. can we compare the incidence of autism among children 0 to 2, compared to a case that got five or six or seven or eight, what they did in 1980 to compared to29. i do not know of any studies.

there are no studies that have done that. >> if you're asking the question, has the prevalence of autism increased over a time when the number of vaccines has increase, is there a relationship? we know they're both going up. we do not know it is, is there any causal relationship between the number of vaccines that are given. 29 of two over years. in 1980 it was eight or nine, or whatever i said. i have the figures from cdc. is there any causal relationship from the number of vaccines, 29 in two years, and higher incidence of autism. we do not know that. there are no studies. >> the way to do such a study would be to -- we would have to >> the way to do such a study would be to -- we would have to