the conference chairman, representative pence sterling said in a day republicans and democrats are actually having a dialogue, this is a good day. the president would agree with that. that's why he looked forward to and enjoyed the meeting he held today with house republicans, just as he felt that way about the meeting he had with senate republicans. speaker bonior said we did very frank conversation. i thought it was forgot it and am looking forward to more serious conversation about how to reduce deficits and debt and create jobs. and the president agrees with that assessment and also of the need in future conversations to move forward with a plan to significantly reduce the deficit and address our long-term debt, get our economy going and create jobs. that is why he is the vice president to lead the blair house negotiations. those notifications have been making progress with her disappearance in negotiations

that we believe the same thing and are optimistic it will produce -- those talks will produce a bipartisan agreement that will reduce the deficit in a bipartisan way because participants will find common ground. i can announce also that the next round of those negotiations will take place on thursday, june 9th. probably at the blair house, but the scheduling apparently on the hill. they're going to be on the hill. remove them around to keep you guessing. and with that, i'll take your questions. yes, sir. >> i heard lawmakers about the median and i guess i'm still wondering whether any specific, concrete progress came out of this meeting today. i ask in particular because it seems like both sides went in

with philosophical differences on how to reduce the debt and came out with the same stance. was there any specific progress? >> two things. one, this is a large meeting and this is not a forum for specific advances of negotiations that have been connected by the vice president with members of both parties in both houses. and yet it was forgot this for the reason i think i mentioned before and that the congress chairman is always good in this day and age when republicans and democrats sit down and listen to each other and constructive nonconfrontational environment. and i think that's a good thing. obviously there are long-term disagreements between republicans and democrats, between this president and republicans on the ideas about how we should address our long-term deficit and all those

disagreements will not be resolved in the next several weeks as these negotiations move forward. but there is common ground in blood on the ground can be found to significantly reduce their deficit. and the president believes that what both sides, negotiating in good faith that a compromise can be achieved and that's what the american people want. so again, i think this is part of a process that is very protect this and helps reduce i think some of the confrontational atmosphere that surrounds some of these discussions. it doesn't mean we don't disagree on some fundamental issues. of course we do and we've been very clear. i think the american people understand the differences and yet they still expect us to get things done.

>> i understand the point about reducing. you think a discussion like this helps the two sites get any closer on the subject? >> i think it helps -- allows everyone in the room to look each other in the eye as one member makes a case for the republican position on the president answers questions. if you understand that each side holds very strong opinions about certain issues, but there's a lot of overlap in terms of what the goals are here and that there's overlap in terms of what some of the solutions are. and sometimes you miss that when you only hear the monologue that passes the daylight when each side is talking to each other through the press. the president feels very strongly this is a useful thing to do. >> representative ryan, he made

the case in his term for his medicare plan and didn't want the president to be missed describing it, the way he put it. is that what the president thinks he's doing? >> no, he doesn't. as i said, there is no question that there are differences. there is no question on the issue of medicare we have significant differences. and what the president has made there is that he doesn't believe that we need to add medicare as we know it and dismantle the program as it currently exists in order to achieve significant deficit reduction. he believes that congressman ryan is the author of the plane and the members who voted are sincere in believing they think that is the preferred solution. you simply disagree we don't think that's a matter of demagoguery. it's a matter fundamental difference of opinion in a different assessment of the facts. the facts in this case are on

our site. and one of the problems we have a date is in order to achieve the reductions that they seek in the house republican plan and pay for the tax codes for the wealthy, that then calls for it they need to do things in medicare that are necessary and produces an unbalanced plan and puts too much burden of deficit reduction on the shoulders of seniors, low income children and the disabled. and the president feels the concept. >> what specifically did the president tell republicans about republicans who came out in meetings that were discussed at the beginning of the meeting that didn't necessarily take up a lot of time? >> it did not take up much time at all. the president made clear he believes that there is no margin here for, in any way cracking down on the possibility the debt ceiling would be raised, that

the effect of even suggesting that it won't have been could be highly negative and could have dire consequences for our economy and the global economy, but it is accurate to say that was not the focus of discussion. >> understand secretary craig nurse in the discussion. >> i know he was in the meeting. my understanding is the president did most of the talking for the white house demonstration. >> secretary geithner is going to capitol hill tomorrow. are you worried the message isn't getting across to republicans about the debt limit? >> i think it indicates how seriously we take this issue and the treasury secretary address the particular substance of why it is so essential to raise the debt ceiling. the consequence of not doing it and the impact it's had on the

market, interest rates, economic growth and job creation. i think if they do consistently from here and others do from other venues, need to simply reiterate the absolute necessity of making a vote in raising the debt ceiling that we do not reverse the very important and substantial progress we've made since the worst recession of the great depression. >> said they are not unwilling to raise the debt limit card that there needs to be in agreement on how to cut the debt and they need to find it helpful for administrations and it would be better to focus on the cut in half to get the debt down. >> what we said is we're doing good. the president's leadership on this is clear. not only did he lay out his plan in his vision for how to achieve $4 trillion in deficit reduction over 10 to 12 years. he then passed the vice

president of the united states to meet these very serious and productive negotiations with the parties in both houses to achieve a compromise on significant reductions. but then the same time frame we to address the vote on raising the debt ceiling. i think that demonstrates its commitment to both necessities. what we've said all along is that he sends the wrong signal and it would be a mistake to directly link or hold hostage went to the other because the the absolute necessity of raising the debt ceiling. it is not an option if you want to maintain full faith credit of the united states and don't want to send this economy back into recession. >> congressman ryan in the meeting today according to ryan made the point that the president, that demagogue game

plan for medicare is not helpful for this process. and while i the president doesn't believe he has done so, does he think the democratic party has done so? has he seen the ad showing them pushing grandma off a cliff? has he seen the way the democrats are using the ryan plan to win elections for political points? >> i don't know what he may or may not see. what i would say, jake, is the substantive differences over medicare are weak and the facts about whatever you call a system that is in the house proposed premium support for privatization or pasteurization of the program has the impact of shifting the cost for forever growing medical costs onto beneficiaries and large, large numbers.

$6400. that's just an inescapable fact. our argument is you don't need to do that. you can find savings in medicare entitlement through the affordable care. and you can get waste fraud and abuse and reduce the cost of medical care while still protecting our seniors. that is what he believes we have to do in one of the fundamental problems and i think what people around the country have reacted poorly to the republican proposal is that not only eliminates or change his medicare program to the point where it is no longer the program we know and does not provide what it used to. but does so in part in order to fund tax cuts for wealthy americans who have already benefited significantly in the middle class and others have

been squeezed the tape. so that's the assessment of priorities. >> i understand there is a philosophical difference. >> to present a fundamentally believes that we need a bipartisan solution, that we need to eat together and find common ground. >> showing paul ryan pushing grandma over a cliff hopes that? >> i think the decisions in negotiations that will produce a result to demonstrate the president's commitment, significant deficit reduction as well as democrats in congress and republicans in congress occurred here in washington. and the fact is that we can achieve that in a way that the american people can feel that

each side moved off its starting position, accepted that it wasn't going to get 100% of put upon it. but no absolute provisions prevail in washington and he feels he has demonstrated his commitment to that, his commitment to taking positions that often are at odds with members of his own party repeatedly. he is unwilling to do that in the past and is willing to do it in the future because he has committed to finding solutions for the american people. >> you haven't answered the question. he said the present is conducting itself in an appropriate way. >> you're asking if there's been a negative reaction to aspects of the republican plan because of the incontrovertible facts about what's in the plan. and our opposition to those

elements of the republican proposal are not at all paper it over. we are interested in bipartisan compromise. he's made that clear again and again and he's walked the walk, not just talk the talk when it comes to making those tough choices. india shown his willingness to do it. [inaudible] >> the question is if there is a resolution that would stop u.s. and military intervention in libya and they are house democrats and house republican leaders who are concerned that it actually could pass because they are in there are enough house republicans who are frustrated with the consultation process and what's going on. if the white house aware of this? >> were obviously aware of what happened on capitol hill, but as

i said before, we feel strongly that the president has that did in a way that is consistent and he looks forward and would be happy with support from the demonstration support by congress and similar to the kerry mccain proposal that was put forward and we'll wait to see whatever action is taken. in the meantime, we are -- we welcome the announcement today by nato said it will extend its mission for 90 days. we feel the mission has been successful so far in protect them ibm's brand tax by the gadhafi regime and we continue to participate in that mission. >> i want to go back to the meeting today. was there any time where republicans are challenging the president quite >> i think is a very frank

discussion. i think it was about his and while nobody hid from the fact that there are differences that elicit useful conversation and i think that's what i heard when i watched some of the republican members after the meeting. we agree with that. definitely don't have differences, but it means that we can, or they can as elected officials stand nearby constituents to represent them in washington and help conversations. if they're democrats they can have conversations with republicans. and out of that dialogue comes agreement. not on every issue, but on a substantial area -- on substantial areas they can allow us to move forward and i think

that's what the american people expect out of this. >> everyone was quite pleased by the dialogue. what was the real movement in the starting point quite >> this is not the form with that many people in the room to put out proposals and spreadsheets and start negotiating details. that is happening in negotiations led to the vice president. but it was an excellent opportunity for the president to hear from republicans for house republicans to view from the president. that is a useful exercise. almost on any occasion, but in particular in this occasion. >> as a matter of principle, he said qatar agreed to are at least as big as the coyote in raising the debt limit. that's something the white house

will have on quite >> i don't have a reaction as a matter of principle. i think the details of the size of the deficit package are being worked out by the bipartisan group is meeting with the vice president tonight don't want to get ahead of them. and i think the treasury secretary is our lead on what we think the debt ceiling though should look like and the size of it. and we think there are distinct definitions. >> the principal at the white house would violate? >> we understand that there is linkage in the sense that some members have insisted there be deficit reduction. we agree with the sentiment that we need to seriously attack our deficit, but we also think it's an absolute necessity to raise the debt ceiling. again, you'll not hear is point them in that way because we think they should not be linked

directly. we believe we can take action -- positive action on both within the same time period. but again, we're not going to link them directly in that way. >> the president made clear what his positions are as he did in his beach at george washington university and has repeatedly sent them and other members of his team have. again, there's not going to be agreement on everything. there will be disputes on budget matters between democrats and republicans next year thereafter, probably the year after that. but there is room for compromise on a number of areas that will host to reduce the deficit significantly to move this process forward. look, we obviously feel strongly that we need to take a balanced approach if you're going to come

up with significant proposals for trillion dollars over 10 to 12 years that would have to include addressing spending of the tax code would have to include issues the president has laid out. there were no lines drawn in the sand. the process for negotiating particulars takes place in conversations led to the vice president appeared our position as well known. obviously republicans, some of them have made their position well known in terms of what's on the table. what stays on the table depends on the progress being made in those negotiations. >> and a reaction to the letter that speaker boehner has signed by 150 economists calling for spending cuts that exceed the debt limit increase. the specific letter, any reaction to that? >> yeah, and these are important

goals that need to be achieved. what is significant debt reduction. we agree that needs to be done. that's what the president put forward a plan with four trying dollars in reductions. it's why he has for the vice president to the negotiations which have been detailed thus far. he thinks it's an absolute necessity that it be raised. i can pull out letters also. i read one yesterday from president reagan's. there is a vast array of evidence a number of experts who can testify to the fact that plain chicken is a bad idea. so that is certainly the president's position. tonight the next meeting is scheduled for june 9. the clock is ticking. do you feel like you need to with the timetable up a little

seal have more more frequent meetings? >> you can be sure the conversations don't stop just because the formal meetings between participants and conversations continue regularly between staff and also between participants. so that is simply the next full meeting of the group of negotiators. we're obviously very aware we need to move quickly in a tank if they were quite aggressively on this, working with members of congress and their schedule to make these things happen. >> he said today's meeting was not confrontational. we heard at least one member challenged the president to lead on this issue. does that bother the president? >> what you're talking about is something we've heard before and i think the president has clearly led in the fiscal commission that because congress

would not come he established in those recommendations helped guide him as he drew up his proposal that he put forward in his speech at gw. he demonstrated willingness to accept spending cuts are not ideal from this date, but necessary in order to achieve agreement he reached with republicans to fully fund fiscal year 2011 and he demonstrated by pointing the vice president to the the peace talks that he is very serious about leading this process to a conclusion producers serious deficit reduction. [inaudible] 's >> i don't want to get ahead of negotiations. he did not offer new proposals today. his postal is up there anything pretty expensive. what is on the table is serious deficit reduction.

the president had productions exceeding that of entitlement including health care entitlements in the affordable care act. additional savings in his vision for future deficit reductions. our beef, if you will come up at the republican proposal is not that you can't find some savings. it is that you do not have to undermine the fundamental guarantee of medicare, undermine the medicare program, essentially ended as we know to get substantial programs to pay for tax cuts to the wealthy. we just don't think that's the right arrangement of priorities. spin that there's no linkage is no grand bargain, but how soon does it need to be reformed? it's been recently downgraded. >> you're forgetting i assume that there was significant medicare reforms and the medical care act. in fact the only aspect of the

affordable care act that congressman ryan and his plan retained, not the protections, but the savings in that year. and again, the president has put forward other reforms. we believe in making a stronger guarantee for seniors in the future that involves some reform and friends david. it does not involve ending the program as we know it. >> finally, secretary geithner has said that they've been assured by republican leaders in the past that there would be debt ceiling and the debt ceiling would be raised. did the speaker reiterate that assurance today? >> i don't want to speak for it to speaker, but i don't know that there was further conversation. there's not much much of a topic at today's conversation. >> you believe that assurance is still offered? >> i believe the leaders understand fully that it would

be extremely dangerous and would have highly negative impacts. so yes, we believe congress will act me believe it's important to know when cast out and create doubt about the possibility that congress is willing. >> congressman mccarthy said he wanted to be more sympathetic to the productions. is that something the president intended to do? >> the president put forward a robust and comprehensive proposal in his speech at george washington university. we are now in a situation where in the negotiations being led by the vice president, they are getting into specifics and we do not eat another proposal out there that has our ideas, their ideas, ideas of others are known and out there and available for discussion. i think slowing down the process

is not in anybody's interest. >> more broadly on the economy, it seems that the housing market and manufacturing numbers and other entertainers that are recovery is not going as well as maybe it was. has that had any impact on the deficit talks? doesn't make the president rethink the spending cut her probation on >> i think obviously everyone is fair, we believe in these negotiations because the end goal is a stronger economy and greater job creation. the president's view is we should do not aim in these talks that undermine some of the foundation that we have to have in order to grow in the 21st century and that's why it feels very strongly the need to protect investment in education, research and development and

infrastructure. it is also true that he believes we need to reduce our deficit. we need to get our fiscal house in order as an economic appearance. we need to do in a balanced way so you don't upset the recovery that we've been undergoing. you don't put a halt to the kind of growth we've been seeing. we're honestly still in a situation where we are emerging from the first recessions as the great depression, with its positive indicators including substantial private-sector job growth including sustained period of economic growth. we have a lot more roads to travel before we get to where we need to be. so all of this is about making sure we ensure the job creation. >> has he given you any interest to rethink about the way we're approaching that? >> no, his approach is always bad driven in part to not do

anything that would reverse privacy. >> the president represents a letter in the meeting today? .but i'm aware of. >> do you feel that if any breach of the close nature of this meaning for a a congressman to send in their send out a constant stream of quick pics while it can process? >> we obviously proposed it to the press because they thought that would be more conducive and having them useful conversation. what individual members stood. [inaudible] last night

>> you mentioned coupled with president stop calling his plan a voucher plan? >> well, like i said, what you call it doesn't change what it does and what it is. if you're basically giving a subsidy of the senate dollar figure that's limited in terms of its growth that won't be a with the growth in medical costs, that's basically getting a certain amount of meat to put towards buying insurance. it may not get a voucher in the mail, but that is what it is. if the issue isn't what you call it. it's the impact it would have on seniors. and impact we think is unnecessary. not only is it the wrong thing to do because it's to maintain a guarantee since it was created, but it's also unnecessary because the cuts are so deep in part because the need to restructure the program to and

it's guaranteed that he used to have is driven by the need to finance tax cuts, that we don't tinker necessary. especially when you're trying to get our fiscal house in order. it just defies logic as far as we see it. >> there has been common ground in plenty of overlap, but listening to the house republicans reiterate basic positions on tax increases, medicare, $2 trillion in cuts over 10 years, can you give us any specific examples of common ground that's been found so far? >> what i can tell you is the negotiation the vice president has been leaning continue. we have another meeting scheduled. they've been forgot it and i think the participants in those meetings feel we've been having useful and they are leading to an agreement.

and it is not useful to the hope of having an outcome that positive to give it a play-by-play as they're making progress. so again, this was not a forum for negotiating those details. i >> i guess my question is i understand why it never adventures to make america think they were moving towards an agreement. you say those talks are fine apart? >> no, they're not. >> others in many to say they are prepared to come you can't point to any specific example of how there could have? i'm not asking you to negotiate in public, but it just seems there's no sign of overlap. you keep him there is. >> again, the sign of overlap is we share the same goal by

roughly $45 trillion over 12 years. backing up, we have identified the problem and agree on what the problem is, the need to reduce their deficit and a and on the broad goal of what the solution is. in getting to the $4 trillion, there is common ground. maybe not all of it. as i said, no doubt in my mind and no doubt inures the republicans and democrats have this agreement signed divisions about budgeting the economy for years to come. there is enough common ground, especially for each side to move off the starting position, to achieve significant deficit reduction. i know that it can be skeptical of people are skeptical about potential compromise during this era discussion. and it doesn't guarantee there'll be a positive outcome,

but we think there's reason to be optimistic not just because were optimistic they nature, but because we feel that negotiations have been put up to. >> one question that the medicare controversy. the demagoguery comes from both sides. sounds like he's referencing the 2010 campaign. >> are not going to get into a back-and-forth, but i will say it's a general statement of fact that politics can get -- >> sounds like he's acknowledging both sides are democrat. >> i'm not going to comment on what a mayor may not have said in terms of the dialogue in each sense. president made clear he is committed to try to find common ground. there is no way to get a solution without a bipartisan

solution, said that requires an atmosphere republicans and democrats who are in the room have a certain level of trust and he's committed to the process. so it will be on that. yes, sir. >> john brennan has gone to sudan and is going to saudi arabia. what is his assessment of the situation in sudan and what progress do you believe was made there? and how urgent is the situation between the u.s. and saudi arabia and what you think will be accomplished in those meetings? >> well, first of all, you're right that he's made these strips. you know, we made our views known on sudan and are concerned about what is happening there very clear and mr. brennan is there to assess the situation. in terms of saudi arabia as an

important partner and we are contacted at a variety of levels with the saudi government and i think this is just part of that to continue contact. i'll take one more from jackie. >> you talked about the long-term budget credit. there are talks that republicans oppose any sort of furthers amulets to the economy. what was the president's response, given be forgotten everything with unemployment at the highest level since the depression, what does he feel about the current economy going forward? >> the president feels, as you know, do we need to further the growth in the economy and the growth and job creation we've seen in the past several months. i don't have a specific readout.

this discussion wasn't about stimulus. it was about overall economy is specifically deficit and debt reduction. the president feels the need to make precisely for the reasons you mentioned, we need to continue to make investments to undergird our economy and allow us to grow in sectors to vital competitiveness. he made that point very clearly today. >> the discussion was really focused on the philosophical difference on whether washington should continue to put money in the economy or provide an incentive for entrepreneurs of all businesses to grow. the president talked about a need for us to continue to quote unquote him best from washington's standpoint and for a lot of us that code from our washington spending. >> the investment that the president was referring to was mentioned and in terms of

encouraging private sector job creation, i would note the rather strong private sector job creation we've seen recently, including 750,000 over three. the president has taken dramatic action. small-business tax cuts designed specifically for the purpose and republicans also talked a lot about regulation and it ain't those of you here last week saw a significant action we've taken, charging agencies to review all regulations under their control to find one's that are no longer efficient, overly burdensome and to report out on though so they can be changed. we take a very aggressive approach to reducing the eliminating regulations no longer necessary to impede economic growth. we agree on many to create jobs to spur the economy.

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following their meeting, they took questions from reporters. the meeting came one day after the u.s. house rejected a bill that would raise the federal debt limit without cutting spending. this is 10 minute. [inaudible conversations] >> good afternoon, everyone. we had a very productive meeting with the president today. we appreciate the opportunity to be here at the president's request. they have a conversation about jobs and the deficit. this morning i released a letter signed by 158 congress who

agreed that were going to get serious about jobs in america, with got to reduce the uncertainty. some of the uncertainty caused by the giant debt and the fact that we're going to raise the document, the spending cut should exceed increasing the debt limit. otherwise it will serve a jobs in our country. that's not what the american people want. we do very frank conversation that was dave, looking forward to more serious conversations about how we reduce the deficit and attach them to get our economy growing again to create jobs. today's meeting gave us an opportunity to express concerns we have surrounding the current situation in the economy. gdp issued a report today, estimating private sector job creation amounted to 38,000 new

jobs in may, woefully short of the not needed for arrests and the economy to get back on track and people get back to work. and now, i said to the president today, it's really important to focus on growth in this economy. as we go through discussion to try to get the fiscal house in order to run in the debt limit vote, very, very important to look at growth is part of the fix. we can bring deficit down through adjusting and get people back to work. we know our chairman is hard at work at putting together a tax reform plan. i asked president hopefully he will work with us to do so and to keep out of the discussions and surrounding debt limit and in any notion were going to increase taxes. it is counterintuitive to believe you increase taxes on those individuals and entities you expect it to create jobs.

>> it was a unique opportunity where the conference got to convey what they were listening to. the president laid out from a debt discussion, but from a conference he heard about jobs. he heard about unshackling burden of regulation on small business and working again from wisconsin to west virginia to members across the way. but i heard from the president is he wanted to sit down and find real cuts now. he said there needed to entitlement reform that we will work with them to report those when we create new jobs and put us on a new path to pay off the budget on a balanced budget and pay down the debt as well. >> i want to thank the president and speaker for bringing us together for this important discussion. every generation of americans has been prior to pack on a better country to the next generation and yet for a lot of americans right now there's a question as to whether or not our children and grandchildren are going to have more

opportunities in the foundation we laid for them is so important and we can't take for granted were going to continue to have the strong foundation for which opportunity and innovation and ingenuity takes place. our tax policy matters. our debt matters, energy policy matters. whether it was her vote last night on the debt ceiling a conversation with the president about job creation, we are committed to taking steps necessary to ensure the next generation of more opportunities. >> any republicans and democrats are actually having a dialogue, this is a good day. what the president heard from republican members of the house is that jobs are jobs number one. that is our job. unfortunately, the greatest impediment we have two jobs today is the lack of confidence in the future where republicans were feeling that the regulatory

burden from the administration creates a lack of confidence in the future. tax policy that is not competitive, tax burden that is too high creates a lack of confidence. and last but not least, a debt burden. the president heard from republican members of the house that we know that the debt burden is going to lead to high taxes, which leads to low unemployment. unfortunately what we did not hear from the president is a specific plan of his to deal with the debt crisis. that could actually be scored by the congressional budget office and we hope there is still an opportunity to work on the drivers of this debt that is costing us jobs because republicans know that until we have the confidence that we can solve this debt crisis by dealing with the drivers entitlement spending, they were

not going to get the kind of jobs the american people want and demand. [inaudible] >> the president admitted free of gotten a look at the economy and the discussion really focused on the philosophical difference on whether washington should continue to pump money into the economy where we should provide an incentive for entrepreneurs and small businesses to grow. i think the president was aware and admitted the private sector job creation is not enough. he did mention a lot of the loss to warn the public sector. again, our message is focused on growth. that's ever going to help bring down the deficit by getting people back to work. [inaudible] >> the president talked about a need for us to quote unquote invested washington's standpoint.

to a lot of us that his code from our washington spending, something we can't afford right now. [inaudible] >> that's not exactly what i said. [laughter] i just said we have to take on this debt and if we demagogue each other at the leadership level, then were never going to take on that day. we the debt crisis coming. what to do with this. we want to grow jobs and economy come only to get spending under control, debt under control. if we try to demagogue each other's attempt to do that, then we are not applying the kind of political leadership we need to get this going again. that's basically what we are saying. >> are you calling her planet voucher plan quick >> it has been this described by the president and many others and so we simply described to him precisely what it is we been

proposing so he hears from us our proposal works some in the future we won't mr. ray said. [inaudible] >> he did mention one way or the other. >> mr. kantor -- >> was that optics, public relations? >> it was for members to communicate directly with the president about our ideas about how to get the economy going again, how to create jobs and our ideas about how we solve the debt problem facing our country. i told the president, one more time this is the moment. this is the window of opportunity where we can do with this on our terms. we can work together and solve this problem. let's not get the can down the road from our time. now it's time to do with it. thanks, everybody. >> speaker, any discussion --

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>> good evening, everyone and welcome to our witnesses and those joining us for the first-ever congressional hearing examining magnitude and severity of the global public health crisis. autism is a think more and more people are aware of is a complex neurodevelopmental disorder that appears to a persons ability to to communicate and relate to others. the condition is often associated with rigid routines for repetitive behaviors. autism is a spectrum disorder that affects each individual differently. types and severity vary from case to case and range from byron to extremely profound. according to the center to the centers for disease control and prevention to a 40% of children with autism spectrum disorder do not talk at all in another 25 to

30% speak some words at 12 to 18 months but then lose the speechd autism occurs in all racial, ethnic and social economic groups and on average affects four to five times more boys than girls. actuall i actually became involved iny the meeting concerned in 1982 w visited with dr. david holmes the founder of eden institute now edin autism institute and i'm very glad that dr. tom mccool will tell us how eden is using its 36 years of experience to improve autism service programs around the globe. i became deeply involved and even more so in 1998 when a family of my congressional district bobby and billy gallagher told me about a perceived prevalence of autism in a township. i requested the centers for disease control and the agency

for toxic substance that it was indeed to be much higher than was generally to believe to be the prevalence. as a direct consequence of the bringing study and the cdc admission that there were no recent prevalent studies in the united states with which to make a comparison, i introduced legislation to authorize grants for autism and pervasive developmental disabilities surveillance into established centers of excellence in autism and pervasive developmental disabilities epidemiology. this legislation, the autism statistics surveillance research and epidemiology act or assure was introduced in 1999 was incorporated into title 1 of the children's health act of 2000, which also established the centers for excellence in autism, research in nih and

created the interagency autism coordinating committee. to continue to monitor implementation of these new federal implementation programs i established in 2001 along with my colleague mike toil the congressional autism caucus to raise awareness of autism and provide a forum for advocacy within congress. the combating autism act of 2006 reauthorized the autism programs created by the children's health act but also expanded the act calling for research into possible environmental causes of autism and creating and, quote, autism education, early detection and intervention program to improve early screening diagnosis, interventions and treatment for asd's. just last week, i introduced along with mike a package of free comprehensive autism bills the combating autism act of 005 which will ensure continuation of the important federal autism

programs for education, early detection, surveillance and search of the national asd act makes the hhs secretary the head of the national autism effort and ties budget authority to the strategic plan for autism research. and the asd act or h.r. 2007 which establishes grant programs to provide important research and services for children transitional youth and adults and establishes training programs for service providers. i would note to my colleagues on a trip to lagos, on human trafficking while there i met with a man, a parent of an autistic child. he is the executive director of the public/private partnership resource center and his wife dr. doris is the executive

director of the oig health foundation and autism center. they told me of the large numbers of nigerian children suffering with autism and the lack of government or other supports. as a result of my discussions with the family, i introduced on february '08 the global autism assistance act which directs the administrative and u.s. agency for international development to establish and to administer a health and education grant program to support activities by nongovernmental organizations and other service providers focused on autism in developing countries and also establishes a teach the teachers program to train health and education professors working with autistic children in developing countries. i will be reintroducing this legislation later this week. while this is a first of its kind hearing, i plan on scheduling additional hearings

on this escalating health crisis and on the global autism assistance act when we introduce it later in the week. i would note that the progress that has been made in recent years and increasing awareness and particularly of some of the more developed countries in improving services and treatment for autism, however, i would note at the same time that we must take seriously the world autism organization's assessment that in every part of the world, the situation we're dealing with autism remains inadequate, even in those countries with considerable experience and understanding of autism because the systems that have been established are being completely swamped by the number of people in desperate need of support. there are a wide range of autism prevalence figures between countries and individual studies. in the united states cdc estimates that close to 1% of the population is affected by an asd. autism speaks, the nation's

largest autism science and advocacy organization describes a scientific consensus that 1% of the world's population or some 67 million people, i repeat an estimated 67 million people are affected with some form of asd. according to the world health organization, i'll include their testimony and hopefully at a later date they will testify as well but in their submission they note that, quote, tens of millions in africa are affected by autism. tens of millions. in that context autism is a developmental disability pandemic. it is largely underrecognized, underappreciated in its impact and underresourced. caring for individuals with autism often takes as we all know a very high physical, emotional and economic toll on families and other caregivers.

more severe forms of autism multitime over the require care in countries autism can overwhen he will their families as their lives become consumed with the considerable challenges of identifying appropriate biomedical and psychosocial treatments, and other needed support systems for their autistic child or children and eventually for as autistic adult. in less developed countries, the situation is even more desperate. very often there are no resources outside of the family to help. and rather than a diagnosis of developmental disorder, the child and the family may face cultural stigma and discrimination pushing the family and the child further into isolation and desperation. we all know that early interventions are effective in improving the functionality of the child and that the positive outcomes from early interventions can last

throughout the life of the individual but very few children in africa, for example, as well as other developing countries have access to such interventions. even in more economically developed nations there are large disparities in the quality of care. concerted actions are required to overcome the global challenges to effectively address autism and other developmental disabilities. we need to continue to help increase awareness of autism at all levels. and in all countries who advocate for the inclusions of developmental disabilities in national and state health policies to increase the availability of quality services across a continuum of care and across the life span and to continue to support scientific research that will lead to more effective treatment and one day to effective strategies or prevention. the benefits of international collaborations and corporations are multidirectional.in

.. learn about northern ireland's autism act of 2011 from arlene cassidy, ceo of autism northern ireland. i'm pleased we will have miss cassidy join us today and she will be speaking to us very shortly. i and other congressional cochair mike doyle signed the memorandum of understanding with the northern ireland assembly to share information, support common interests regarding autism. in addition to tom mccool and arlene cassidy testifying here today will be brigitte kobeman founder of the foundation of africa and andy shih, who's the vice president of scientific affairs for autism speaks. we're all looking forward to hearing the valuable perspectives that each of our witnesses bring to this discussion. and although they are not here today, i would like to recognize the autism society, who will testify at a later hearing for

their invaluable work in advocating on behalf of individuals with autism both within the united states and in the international community. i've been informed that tom payne, who's our ranking member who is en route and who will be here to a half hour to an hour. i guess he ran into some delays at the airport but he will be here and we'll be joined by some other members as the hearing progresses. i'd like to ask our distinguished witnesses to come to the witness table and i will begin with their introductions at this point. we'll begin with mr. andy shih, who's the vice president for scientific affairs at autism speaks. he's -- autism speaks as i think many people know is the nation's largest science and advocacy organizations dedicated to funding research into the causes, prevention, treatments and cure for autism, increasing awareness of autism spectrum disorders and advocating for the

needs of individuals and their families. mr. shih works closely with members of autism speaks board, scientific committee, senior staff and voluntary -- of volunteer leadership to develop and implement the organization's research program. he oversees -- he focuses on things that include genetics, environmental sciences and epidemiology. and he also leads autism speaks international scientific development efforts including global autism public health initiative and international advocacy effort that intergrates awareness research and then scientific development. i note parenthetically in 2005 and 2006 when the reauthorization was very much in limbo, whether or not it would actually occur, autism speaks moved heaven and earth to make sure that legislation was enacted and i congratulate you on your extraordinary advocacy, senator santorum's bill that did become law and passed both the

house and senate, obviously -- it was a great credit to your organization as to how well you helped to bring that about. so i congratulate you on that. we will then hear from ms. arlene cassidy who's the ceo of northern ireland's autism charity known as autism ni. she specializes in autism spectrum disorders for 20 years and has provided the research service development and strategic lead for autism ni or northern ireland the in the development of an internationally acclaimed early intervention program for autism including a catalog of academic research and published journal articles. she's led the charity as an accredited training agency as well as an effective agent for social change through a community development and partnership ethos which she has provided the foundation for the charity's family support services and an effective -- political lobby for a dedicated northern northern ireland autism act which was signed into law in northern ireland. we will then hear from

ms. brigitte kobeman, who moved to the united states over a decade ago. in 2004, brigitte's daughter had an autism spectrum disorder and they moved to where their son can receive appropriate treatment for his choice. back in maryland brigitte founded the not-for-profit autism community for africa in 2008 to create a platform to share her experience and help african families in need by providing them with information and resources. brigitte also represented her country and was voted miss congeal -- congeniality.

and then we will hear from mr. tom mccool who is president and ceo of eden autism services, a new jersey-based nonprofit organization that works to improve the lives of children and adults with autism and their families. eden provides a specific variety of needs throughout the life span. mr. mccool is the founder commissioner on the national accreditation of special education services and founding member and current vice chair of the national association of residential providers of adults with autism. he served on the medical investigation of neurodevelopmental disorders institute advisory board. he's currently a member of the autism society of america and is serving as treasurer of the national association of private special education centers. he's also the chairman of the board of autism services group. i don't know where he gets the time. mr. shih?

>> thank you, congressman smith, and members of the subcommittee for this opportunity to share with the autism speaks and goals of autism. i'm andy shih i'm part of autism including research and gifkz in terms of sciences and epidemiology as well as an international scientific development environment. i'm a biologist by training and i have the honor and pleasure of serving in the austin community for a decade. as congressman smith mentioned, it's scientific basis 67 million people for about 1% of the world's population is affected with some form of asc. a prevalence higher than aids and cancer and diabetes combined. though there's no medical ker

four autism treatment can work if diagnosis is early. the recognition for need of better screening for treatment has led groups is such as the american academy of pediatrics command the screening for all children between 18 and 21 months years of age. the success -- the success is improving care both in north america and europe also makes it clear that these approaches can be adapted and extended to countries around the world. unfortunately, today, in most of the world, dinosed intervention is more aspiration than legality a major barrier to improving the health and well-being individual in the family is a lack of expertise and capacity to diagnose the disorder and to deliver appropriate intervention. with our expert and capacities it improves the quality of life for individual asc and their families from being out of touch. in many countries there's little awareness and simply no often service providers. as a result, affected children and family do not receive proper care. and support. an opportunity for better outcome and improved quality of

life for the families are lost. to address this global public health challenge in 2008, autism speaks a public health initiative. an ambitious advocacy effort to provide support to other countries in order to enhance public professional awareness of autism and to increase capacity to enable early detection intervention as well as research. the core value of a sense of urgency, scientific excellence and families touched by autism, public health initiative or gap provides technical expertise and support to our partners to help realize their vision of progress. to collaborate broadly and incluesively with stakeholders of all levels, clinicians and science as well as parents and families because we recognize the development and implementation of meaningful and sustainable program solutions required local leadership and ownership. strategies and content are continually informed by the latest research in clinical

dissemination and science. in addition, the experience we gain in data we collected from gap programs would help us advance and refine autism science and inform service and agency development. indeed, benefit from the gap-related activities are expected to be reciprocal with greater international collaboration and there will be new insights into a success c causes including environmental factors, social cultural influences and diagnosis and treatment, education, and service development. interests that will help affect individual families the world over including those in the united states. autism speaks currently support gap-related countries in 26 countries and six continents and these collaboration are already yielding impressive returns for our community both here and abroad. we have a country like brazil, mexico, qatar have their own established their own collaboration with u.s. scientists. they are supporting governments like albania and ireland with the international health

policies and program. as an initially ngo partner of the w.h.o. and working with geneva and health minister industries in the south of europe and southeast asia to develop a regional health networks to develop awareness and training. autism speaks and w.h.o. are collaborating bangladesh collaboration office and the ministry of health, to host an international conference this july -- this july in dakar. to bring together like-minded scientists together for several countries to explore regional coordination collaboration. finally, the recently published first ever prevalence in south korea reported two prevalence of 2.6% with many previous cases found in the mainstream schools. in addition to the potential implication for environmental

science research the difference between case methodology using the korean study and the one used by cdc to determine cdc by our statistics and if we are underin the autism. the prevalence in other public health data and their policy and service development is not available in most of the world. however, our recent estimate over 90% of autism research conducted on about 10% of the global community. and supporting gab related activities like korean opportunities worldwide it's to help bridge the knowledge gap in foreign policy and development and hence evidence-based and as a result narrow the service gap. in south africa, for example, we found a prevalent study where aids is an epidemic. with public health statistics and explore a compromised means system on brain development. simultaneously we're working

with stakeholders from that country including government officials to develop consistent community priorities having upcoming programs and discussions with public agencies and it's worth noting that one of the recurring themes we've encountered with health officials and low resource countries in those in africa is how best to prioritize autism with so many life-threatening diseases and conditions such as aids, malaria and malnutrition compete for public health resources. while we understand that perspective, we believe that such a public health policy-making is overly simplistic. as child mortality increases, simple math predicts an increase of the disability. so instead of seeing mortality and development disorder like autism as two distinct public health challenges it should be tackled as part of the same problem. autism speaks and our partners around the world believe that by addressing autism-related disorders now south africa and the other developing countries can get ahead of the curve, help

maximize outcomes for individual families and limit long-term costs to society. in conclusion, the daily challenges are familiar to any individuals of families in this country struggling with autism spectrum disorders. by sharing our experience, expertise and translating and adapting best practices into health solutions we believe we can make a difference in communities with less know how and resources. just as important, we can also learn valuable lessons from these collaborations that can help improve the quality of life to our families here. but we need help. our work at w.h.o. has a power of collaboration in the salary and progress and speed and delivery to answers to our families. we welcome suggestions, and recommendation about how perhaps we can work with other government agencies further our global effort. thank you. >> thank you very much for your

testimony and again, thank you for the fine work that autism speaks does not just here in the u.s. but here around the world. i'd like to now invite arlene cassidy who's the ceo of autism northern ireland, if she could provide us with her testimony. apparently, audio part of this has not come through. i would note she is speaking to us from our -- the u.s. counselor's office in belfast. >> thank you. >> thank you for being here. >> please let me begin by thanking chairman smith, ranking member payne and the members of the opportunity to appear before you this evening. i hope that by the end of this evidence, the subcommittee will look beyond the relatively short history, 20 years of the autism movement in our small country and recognize the huge steps taken over the last four years to address the issue of

inequality, the legacy of neglect regarding service planning and funding that is our experience. in my written evidence which was submitted last week, i referenced in some detail the impact that they had of stunting the growth of economic growth in northern ireland. those decades of that particular civil conflict coincided with the birth and spread of the global autism movement but that wave of autism awareness and knowledge passed us by. the progress regarding post-conflict reconstruction of northern ireland, therefore, has been a barometer of the fortunes of autism. in the 1990s, knowledge about autism swept and was absorbed by families on the nonprofit sector but government ownership was absent. the subsequent decade has witnessed the fledgling efforts of various government departments to plan strategy for autism alongside the establishment of the northern ireland assembly. the question is are we going in the right direction, and yes,

this can be viewed as progress until one considers that planning has been limited to single government departments such as health, planning has not built on the developments of the 1990s. instead, the more proactive government role has resulted in existing services being deconstructed and innovative local research ignored causing delay as new untried models are in place. also planning and liaison is more disconnected between the statutory sector and the nonprofit sector than ever before. the funding priority overall is still very low. funding allocations are based upon an data placement of asd within the learning disability budget the result asd services are funded by money taken from the learning disability budget feeding back into the lack of services for people with asd with an i.q. score of 70-plus. the campaign for the northern --

for the autism act ni 2011 began in the homes -- began in homes across northern ireland as families increasingly voiced their frustration about how the lack of dialog and planning across government's departments was seriously impacting on their lives as support across the various life transitions was challenging for individuals with autism failed and failed again. the campaign for the autism act began in the hearts and minds of parent activists. increasingly aware that the core of all the flawed planning and absent funding was a fundamental inequality. asd was not recognized or clearly defined in disability-legislation in the united kingdom. resulting in all the decisions regarding service and benefit entitlement that are based upon disability legislation being open to interpretation, rejection and inconsistency. this campaign united families a nonprofit sector and public

representatives at a period in our political history when the art of lobbying political institutions was in its infancy and lobby agencies were nonexistent. a democratic lobby of the people have been created so we made an impression and we had to -- because the status quo was against us, few public servants understood the need for change and, therefore, they opposed it. the campaign gained momentum in 2006 encouraged by developments in wales where the welsh assembly government to unite the public and nonprofit sectors in planning for asd across government departments. within the u.k. and across the world, the call for national strategies and legislative social change was getting stronger. the creation of the celtic nations autism partnership and the 2007 delegation to washington, d.c. to meet with the cochairs of the autism

caucus was part of that movement. it was no accident, therefore, that the autism act is rooted in the realities of our society. it is unique to our situation and in the aspirations of the families here. yet, it is an example of one mechanism that is available to many societies in addressing fundamental human rights and the inequalities when the state is resistant about its legislation. there's little doubt that the changes brought by the northern ireland about the definition of disability will reverberate across the other jurisdictions within the u.k. and the republic of ireland. if the autism act northern ireland initiates legislative change beyond its own jurisdiction, what a complement to the journey we have traveled. the next steps at home are crucial. as the northern ireland agrees the implementations for the autism act we must ensure that the lessons of the past are well

learned and that families living with autism are not disenfranchised again. there has never been a budget or cost center for autism across government departments because -- well, a budget for a condition that doesn't exist in northern ireland and when there's no data there's no problem. this will be the greatest challenge, finding the budget, quantifying the need. the autism act is our hope. above all, it is evidence that we have citizens with autism who can no longer be ignored. thank you. >> ms. cassidy, thank you so much. if you could hang on for a few moments, perhaps to answer some questions, we will go now to -- and i want to again thank you for the work that you've done with the all-party caucus which works so closely with our own caucus here. the more we collaborate, hear best practices and learn from your new autism act of northern ireland, 2011, the better.

we could all borrow best practices and hopefully put them into law and policies so thank you so very much. i'd like to now ask ms. kobeman if you would now proceed. >> thank you, congressman smith, and members of the subcommittee for the opportunity to share with you my experience in dealing with autism in africa. my name is brigitte kobeman, founder of the autism community of africa and a mother of a child with autism. in 2007, after being invited on the voice of america television to talk about autism in africa, i was contacted by a young lady from nigeria. she was asking for help because she recognized the symptoms of autism that i had talked about on the show. and she was convinced that her brother has autism. but she was more alarmed by the

treatment that he was receiving. he was tied on a tree and beaten with a stick to chase the evil out of him. and a lady contacted me because the lady was on the verge of depression. with the cultural stigma labeling her daughter as a bad omen, and the constant challenge and lack of sleep in raising her daughter, the mother end up in the mental institution. another concerned sister from atlanta, georgia, contacted me because her sister in ethiopia was exhausted. her der was looking for something, anything that could help her deal with her daughter's autism condition. we can say with caution that through the years the awareness for diseases like hiv/aids, malaria, and malnutrition has

reached a great deal of maturity in africa and around the world compared to others. the minister of health in an african country which i will not name for privacy once told me, what is autism anyway? what is malaria? everyone knows malaria. my point exactly. everybody knows malaria. not to minimize this issue in any way, but what do we do after children are feeling better from malaria? malnutrition, or receive treatment for aids but still have autism. in africa, children with autism are a burden of most families and society due to the lack of awareness, education, and proper treatment. they need to be given the necessary tools to care for themselves. autism can be treated. my son is a living proof. he was unverbal until the age of

4. after receiving his diagnose. my husband as the congressman said earlier. that avenue battle that people with autism faces. it was hard, frustrating and sometimes brutal but we had to keep going because we knew our failure as parents was not an option. vine was lucky enough to be born in the united states of america where he's able to get the treatment that he needs. the infrastructure are there so we as his parents have no excuse to fail him. today, at 11 years old, even though he's a little different from his peers, vinnie is self-sufficient and he's in mainstream school. he's doing well according to his iep and his education plan. sometimes during our conversations, he gives me the magic phrase, mom, you just don't understand. and to have the attitude to go

with it and i smile and thank god for living in this great country but my joy is bittersweet because i think of all the children and families in africa and i shed a tear. the children in africa are not so lucky. they have nothing to help them, doctors don't have the equipment necessary to dealing with the problem and there is no follow-up program. as of now, a few ngos in countries like nigeria, cameroon, south africa, ghana are struggling to take on the challenge. these ngo were created mostly by parents who were frustrated by the lack of infrastructure to help their children. but they are faced with a variety of challenges, lack of funds, lack of support from the government, fear from family to shield the evil child with autism, et cetera. the mother told me once, if i show my son to you, what are you going to do for him? and this is the reality on the

field. these kids are hidden. they are afraid to show their children with autism because they know there's nothing that can be done for them. they think that they should just expose themselves and the child, they think that they will just expose the child for nothing. they do not have any hope. they do not seem protected. and i think that the local government by collaborative with ngo and families will have those who bring them a sense of security. throughout my work and experience with aca i have the experience to work with many families with autism and decision-makers in the united states and around the world. one of the main obstacles i observed with regards to the african continent is the lack of political will. for any program to be successful, leadership and ownership is required among other things. but the majority of the leaders

and stakeholder on the local level in africa are either misinformed or just not interested in the subject. again, to think of the minister of health ask me the question, what is autism anyway? just imagine the level of knowledge among the population. one of the great challenges is poverty. many families do not have the means to see a doctor, let alone care for a child with special needs. and for those who can afford it, well, there are no resources. hence, the importance of autism awareness campaign in africa as well as care. thank you. >> thank you so very much. we're joined by our distinguished gentlelady from new york. >> thank you, mr. chairman. and thank you for holding this hearing on an issue that has significant global health implications. autism can be difficult to diagnose and even harder to

understand especially those who have any specially acquaintance with the disease or disorder. autism is no respecter of all limitations. regardless of whom it affects autism is a heavy burden for families who have a child with autism. but there is hope. modern medicine has seen the development of new treatments for autistic children. early intervention is key. autism no longer has to be a barrier to the future successes and fulfillment of those affected by autism. with the increasing prevalence of reported cases of autism, this hearing is indeed timely. and i'm glad we will have additional hearings on this topic. thank you, mr. chairman. and i yield back. thank you. >> thank you very much. i'd like to now yield to whom it may concern to mr. mccool. >> congressman smith, thank you for inviting me to participate in this dialog by the global aspects of autism.

as you mentioned eden autism services started in princeton, new jersey, 36 years ago. and during that time, our organization has gained a great deal of knowledge and experience in addressing the needs of children, adults and families impacted by autism. all of us in the autism community recognize that there's a lot to be done and each of us has a role to play. in its short history autism speaks has been able to significantly increase awareness of autism and its impact on families. they've also been extremely successful in raising funds to support its awareness activities and also support autism research projects. in recent months, autism speaks has begun to focus on the plight of adults with autism. particularly, looking at the broad range of residential, and employment programs needed to support this growing population. the autism society, another one of our partners, has a long

history of bringing family members and professionals together nationally and through their local chapters. they annually present successful program models and that can benefit a broad range of needs for children and adults with autism. the autism society financially supports training programs for teachers and direct care professionals working in the field of autism. eden has not yet had the opportunity to work with the autism community of africa, however, several eden professionals have visited africa to work with families dealing with autism. eden provided family and staff training and the eden curriculum. the role eden autism services plays in this arena is the direct -- is the direct service delivery component. that interaction between a person with autism and those teachers, family members and other professionals that follow

a proscribed scientifically based treatment methodology. eden does this in its schools and adult residential and employment programs and works with other direct service providers across the country to duplicate this treatment wherever needed. there are two basic components to this process. the first component is the treatment model. in 2009, the national autism center issued its national standards report that emphasized the importance of evidence-based practices and the need to ensure that research-based treatments are given the priority over those that have not yet been proven effective or those that research has shown to be ineffective or worse. the second component is the autism-specific curriculum. the teaching content that promotes the acquisition of knowledge and skills that

support the person with autism i-ability to function in society. eden has developed an autism-specific curriculum that is used in both public and private schools across the united states and several other countries. eden autism services in the thousands of direct service providers across the country provide that intensely personal interaction between teacher and student using treatment models and lesson plans to decrease and eliminate appropriate behaviors and increase the capacity for children and adults with autism to live as productive citizens in society. eden has acquired expertise in teacher training, family training and direct care training using applied behavior analysis in addressing problems behaviors exhibited by children and adults with autism. we've developed a curriculum that contains hundreds of specific lessons that can be

used effectively by teachers, family members and direct care staff. our goal is to share the knowledge and experience eden autism services and many other direct service providers have developed to improve the quality of life of children, adults, and families impacted by autism, wherever they are. the information is available. the technology is available. and our hope is that we will be able to find a way to share this knowledge and bring help to those children, adults and families impacted by autism in other countries where such help does not exist. and the one thing i wanted to mention that we have gotten involved in most recently that has significantly enabled us to directly impact more children with autism and it's a social networking network called edweb. and edweb builds communities

where different types of educators or different educators can directly connect with one another so eden has hosted the autism community on edweb. and it is a way for teachers who are working directly in classrooms with children with autism to connect with one another and deal with very specific issues and an email people ask goes out to everyone on the network and a question is asked how to deal with a specific issue and immediate response is taken. and edweb is available. it's on the internet. it's something that could be very valuable beyond the borders of our country. so we're looking forward to working with our partners. and to take the knowledge that we already have and find ways to get that knowledge and experience to those who really

need it. thank you. >> thank you very much for your testimony. and for the great work eden has done for all these decades, at least for this member and i know many other lawmakers including our governor, eden has been transformational for us in helping us to understand this devastating disability. so thank you so much for the great work you've done. let me just begin the questioning. i'll start with mr. shih, if i could. you spoke of the global autism public health initiative, which you began in 2008. i know that w.h.o. began a six-country pilot program in 2008 as well and i'm wondering what kind of collaboration your organization is having with the world health organization? and if you could, what are the biggest challenges -- you know, we just heard from ms. kobeman when she and others speak to other ministers -- and i raised

this with other health ministers any chance i get, the knowledge base is so rudimentary but it seems as if and you, i think, offered a very clear way forward that we need to see this as the other side of the coin in mitigating the child mortality as that improves obviously this will exacerbate and get worse unless we address it. so if you could speak to the global health initiative, the global autism public health initiative, maybe elaborate on that for us, if you would, and also in your answer if you might speak to where are we now in terms of getting to the root cause of what is triggering autism. i know it's always controversial. i'll never forget in 1998 when i first imposed the brick study

some very well meaning person from the centers of disease control got up in my face literally and put her finger in front of my face and said -- when i mentioned vaccinations as a possible maybe multivaccinations thimersol people were concerned about and maybe still are and i was told not to go there. and i'm a very strong advocate of vaccinations. i was the sponsor of the amendment that doubled the amount for the child survival fund in the early 1980s. i was in el salvador when they immunized upwards of 200,000 kids against polio, diphtheria and pertussis and other diseases but there should not be a collateral of doses where a little body cannot metabolize

that. so if you could perhaps speak to that as well. >> thank you, mr. chairman. first, to address your question by the global public health initiative. we are an official partner with the w.h.o. their mandate is a little broader than autism speaks. their focus is on the child mental health and disability including autism. and we see our relationship as one where the community has gotten together with the international agencies and health agencies to address the tremendous public health challenge that was hiv infection. and as a result, even though the focus is on hiv or aids by these groups, i think it can be argued that they have benefited the diseases and research services overall globally and we see a similar kind of relationship of the w.h.o. to the health priorities. so the six pilot programs that

you had mentioned that the w.h.o. recently launched, we are in discussion about where we can be helpful. we are part of a discussion, ongoing -- at the institute of medicine, the new york science board talking about how we address mental health and disability development needs in sub-sahara africa. my expectation is that activities with these pilot project would be launched in the next six to nine months and our expectations would at least be part of those efforts. indeed, the bigger challenge, i think, in addition to capacity and expertise is really is awareness. as ms. kobeman mentioned, at the country leadership level often with you run into individual ministers and highly placed officials who knows nothing about autism. and that makes the challenge of helping the families even more

difficult. what autism speaks does on a yearly basis now is that around the time the united nations general assembly, we organize an awareness event for the first spouses of the world's leader to bring them in and show them a little bit what we know about what's happening in autism worldwide and we ask for the help. this year actually we're going to be working with w.h.o. so that in addition to bringing -- engaging the first spouses around the world but also bring in the ministers of health in these countries so that there would be a more immediate connection from the good will by the leadership and the public health officials of that country so we're optimistic that going forward we'll be able to bring higher level awareness to public health official, education officials as well as leadership from around the world. it is actually very exciting

time for autism. i think over the past four or five years, there has been a tremendous amount of advances made in terms of understanding the causes of autism. i think it's always been and it remains the case that autism is like diabetes. cardiovascular disease. it's a complex disorder that involves genetic predisposition as well as environmental factors. in recent years we have learned a lot more about genetic architecture autism and we understand where the problems are, where in the biological system that goes wrong that results in autism. and that has given us is foundation in which we can explore both development and new interventions as well as environmental factors, interactions. so we have now started partner with industries as well as other federal agency including the nih to look more deeply in the causes of autism. what can we do is turn this knowledge into meaningful applications and solutions for

individuals and the family affected by this disorder. we're also working with -- with industry as well as public agencies to take best practices and to disseminate them broadly. because we do know things that behavioral intervention as a result of the diagnosis do work and do help many individuals of families affected by autism. the challenge has been to disseminate these best practices in every corner of this country as well as the world. >> as a follow-up, you mentioned working with nih, i've met with dr. shaw twice, the head of the u.s. agency for international development and stressed with him the importance, i think, of usaid with its multiple missions in overseas and especially in africa to initiate an autism initiative within the department. and i'm wondering have you had collaborations with them and same way with dr. friedan, internationally with cdc.

are they also looking to dedicate and prioritize autism at those two agencies? >> sure. i think global health is a priority and we're fortunate to be able to work with mental health and human development, for instance, in this area. cdc similarly has an interest and often globally in international research network that autism speaks is a network that's actually codeveloped with the cdc and with research from 30-plus countries. i think that usaid and other agencies is certainly some, you know -- we will welcome the opportunity to work with them. we'll have a prousaid and understandably at that point. autism is not one of their priorities. but we certainly look forward to revisiting that opportunity and to work with agency.

our sense is that from our travels and conversation with stakeholders around the world, it's a highly respectable agency and their work has had tremendous impact on the population around the world and we would love to be a part of that. >> you were very diplomatic and say it's not among the priorities at usaid. is it even on their agenda. >> i think so but i think it's a matter of prioritization. yes. >> you mentioned south korea, 2.6%, which seems extremely high. is there any -- is it better prevalent studies or is there something that may be triggering autism among south korean children? >> right. i don't think we have a simple answer at the moment. i think the study has sort of set the stage for more elaborate study in including at the environmental study but a creative study that's more comprehensive than being used here in the cdc. the korean investigators went into the general schools, the

mainstream school trying to identify children who might have been missed. and shockingly, stunningly while they look at the -- just the special schools as we do here, the prevalence is about the same, about .8, .9% but the mainstream school, there was almost 2% of kids that had not been previously detected and served by the community. so i think the lessons here from our perspective is that we should think about using perhaps a more robust methodology so we can get a more accurate reflection of what's going on. >> okay. please. >> i yield. >> thank you, mr. chairman. well, i want to follow up on the question regarding the methodology. it sounds to me like our message goes into schools and not in the general population of children in schools. is there anything else that's different between how we conduct our research?

>> i think that's the main difference, right? i think what we're encouraging people to do now is try to do case finding in a comprehensive manner the way we have done in south korea. because i think -- when i often think about the korean study is not necessarily of high prevalence of south korea, even though that is very important, i think about the individuals and families who are -- who have not been officially diagnosed who may be struggling through schools, try to deal with all the issues that they're dealing with little assistance at this point. i think as a society, as a community are in a position to do something about that. we have the resources. we have the means which we have defined them at this point. >> thank you. >> i'll return to our distinguished gentlelady from new york. just a few more questions if we could. ms. kobeman, you mentioned the cultural stigma labeling that

daughter as a bad omen. i would note parenthetically i would recently in nairobi and met with some nurosurgeons who are working on treating children who have hydrosephallic conditions and in one case i was told in uganda children who develop water on the brain or this terrible and lethal unless -- there's an condition a hydrosephallic condition are often seen as a bad omen or something along those lines. and i'm wondering who can be done to dispel that very dangerous myth which leads to these children being ostracized. when i was in lagos when i was on that trip, he said that some of the children in nigeria are just put aside and they are allowed to die because they're thought to be contaminated or possessed or some terrible condition rather than a physical developmental disorder that with the right interventions could be

greatly helped, if you could. >> yes. that's why we are trying our level to take home the awareness. the most important part is letting people know what's going on. that the children are not bad omens. so communication is the key and the way to communicate in africa -- most countries in africa is using the media, you know, tv, radio, and even having social walkers go in from school to school of villages and villages and having forum. and they know this person is coming from this government health department talking to the village and they will come to a public place and the person will talk to them. so it's organizing a small group of leaders that can go to these places, family, and villages and talk to them and say, it's okay to come out.

you do not need to hide your child. and your child is not a bad omen. in my case, the lady went to see my mom when i went on tv and i was talking about it. she was she went to her 19-year-old daughter hiding her out and she said because of your daughter i can bring her out and i'm not afraid to show my daughter. communication is the key, you know, at tv, radio, and anything like that. >> you were at a work autism conference in south africa in 2006. could you -- was that issue addressed particularly for the sub-sahara and african context and could you just elaborate on the buy-in. were there health ministers there? was there a robust participation? was it what you expected? >> no, it was not, actually. it was a little disappointing. we did have -- it was part of

the world autism congress who did have people but i think from about 53 countries were represented. and one of the things that we tried to look at was what was available in that part of south africa. we didn't go through the entire country. and we found that many of the children were leaving or were being taken from the home to get the proper educational programming because they couldn't get served and the families were resistant to recognizing that this autism was something that could be -- that could be treated in a positive way. so we actually visited a school, a nearby school, that had about 100, or 150 children who were basic or educated out of the home because of this issue. >> i know that eden is involved

in singapore, developing curriculum, philippines, canada, israel, south africa. could you, you know, tell us what is eden doing? >> yeah, these are very specific-focused activities where we're contacted by someone, often -- we have groups that travel through the u.s. to look at model autism programs. and will visit in eden among the programs that they look at. what we found is that they -- they really look at the behavioral interventions as the priority for autism. and so applied behavior analysis is something that is demonstrated effective and people want to learn how to be trained and to train direct care workers and families. what we found they are so focused on the behavior, that

they fail to bring content into the equation. and so in many cases they're not teaching specific skills. they can observe classrooms and teacher interactions anywhere in the world. and has done so. and so she can actually watch the behavior, consult with the teacher or the family and sitting in new jersey and really provide that kind of support to anyone anywhere in the world. ..

all of the people we have worked with is far have been able to navigate with english. >> you mentioned the 500% increase in the diagnosed autism cases in northern ireland. since 2002, can you tell us to what you attribute to this increase, and second, you know the 2011 autism that of northern ireland is among the most progressive and i think enlightened pieces of legislation anywhere in the world. are there recommendations you might have for us on how we can improve our efforts and of course that might be replicated elsewhere. finally, you also point out that the troubles in northern ireland with no parenthetically we know that we have 11 hearings on this subcommittee on the troubles in northern ireland so we are acquainted with what he's been through. but all over the world especially some of the places in

africa has gone through its own problems right now, and we are told that the autism resources organization has shut down during the crisis. so again, kids are put on hold while political problems are terior deteriorated into violence. so you can speak to some of seks, and those setbacks and their needs to be a separate focus on what do we do in the conflict areas.c there needs to be some awareness autistic child do not go away with political turmoil. >> yeah, thank you. well, starting with the 500% increase, i think that ties in together. i think that reflected a catch up. you know, no doubt a collection had taken place, and then all of

the sudden one of our government departments decided to do some data collection with school age children so there was a captivated add vens with school age children, and a number of years later they kept on that data collection. that's really all we have to go on, and i really know that in 2002 even when the original report was done, they talked about an autism wave traveling through the school system in northern ireland. they knew there was the tip of the iceberg going on here, but i would attribute it to really the way it happened worldwide. exactly the same issues as you picked up on. it's about increasing awareness, expertise, and identifying and

diagnosing the condition. i do believe there's a lot of questions to be asked about environmental factors, so we're just with everyone. i don't think there's anything particular to northern ireland except for the fact that there was until there was no baseline information gathered, and there was the baseline data gathered of school age children in ireland, and then a number of years later when the same exercise was carried out, they figure they came up with almost 5,000 children. soda that collection has been issued, and in northern ireland various services are starting to collect some data, but the data

is nontransfer issue and particular to that service of child health or education, and the departments have not been exchanging the information, and that's one of the really, you know, good things about the legislation that's come about because within that legislation, there is a requirement for all government departments to agree, to communicate over data that they are collecting and to develop a common language so that they can plan within single departments and across departments. i would be extremely humble with regard to our legislation. we are tremendously excited about it because we come from such a low baseline, and we believe we have addressed a core difficulty, and that is the whole inequality issue. it was one of those, you know, your -- eureka moments we had realizing the legislation was out of

date. i know in england they upped their disability legislation and created the english equality act, others involved in the u.k. did not, and northern ire ireland, we looked at it initially, probably first, discovered the legislation was out of date, that it didn't make alliances for the interpretation of autism within the definition of disability, and therefore, that needed to be changed so that is one of the things that's really exciting about the new legislation as well. in short, i suppose the new legislation for us is really recognizing autism for the first time within disability legislation and protects citizens with autism and gives them a voice and gives them a

position. the other thing that came about was the legislation was the need for a cross departmental approach to autism and a government approach to autism, and with our particular, we have particular challenges with the mandated correlated system in northern ireland in the assembly where various ministers are in place from various political parties, and their policies may or may not agree, so, you know, policies and individuals bump into each other from time to time, so it was quite something to get uniform agreement, so i think this legislation to my knowledge is the first northern ireland legislation that requires our government ministers to work together on an issue, and that issue being autism, so that's another first, if i'm correct, that's another first for this legislation. as in the legislation, it requires data, but it also

requires the government to fund utism .. awareness campaign, and i agree absolutely with your previous speakers. i think one of the greatest challenges for autism in the world is knowledge. ignorance is the greatest enemy. arrogance too, and, you know, i think with the situation in northern ireland, it comes back to your third point, the particular conflict situations. i think parents are paramount. this legislation would have never come about in northern ireland if it hadn't been for the non-profit sector, you know, and working with parents on the issue of parent empowerment and to make their voices known because they were basically disenfranchised citizens and now they developed a voice, and they

were able to lobby their local public representatives and get their voices heard in the northern ireland assembly, and there was uniform support for this legislation across the parties, so that was very encouraging to see, but i think it was given the troubles that we have had in northern ireland, it was fantastic to see the bill become law, and, you know, the members were congratulating other members across the aisle for their role in bringing this legislation about, so i think i would end by saying that parents are paramount. i do take the point -- you know, we had about the society, and, you know, in a part of africa going to disbond in a time of

extreme conflict. that actually happened in northern ireland because in 1970s there was an autism charity, and they fractured as well, and it wasn't until, you know, it was 20 years later that in 1990, the charity that i work for was formed by parents again, and that time, the timing was right, and, you know, that was in 1990, and that was, you know, people's minds were turning to can this go on forever and looking to maybe towards cease fires which came a few years later, but, you know, certainly, you know, and the legislation in northern ireland, the parentings and the links they had with local politicians, they brought local politicians to family events so the politicians could see what it was and what they

were coping with. you know, and the home situations, some very challenging children and adults, and gradually -- this took ten years, this legislation, a lot happened in the last four years, but we've been working on this with local parents and politicians for the last ten years. i hope that helps. >> thank you very much, and i'll remind our colleagues and audience that she is in our consulate's office in northern ireland and most appreciative of her leadership and time in joining us today. congresswoman burkel. >> thank you. i want to go back to your previous testimony with regards to the research that cdc is doing, and you mentioned we should be more comprehensive. we talked about what venues we go into. can you expand on that in a

perfect world what you consider comprehensive research? >> i think in an ideal world the data that we use to estimate prevalence of autism in the united states should come from multiple sources in addition to special schools and physician records. there probably should be some effort to screen the general school population. not all of them of course, but do it in a representative fashion just so that we can be sure that we're not missing any childrens that perhaps of the condition are actually in the mainstream school and try to deal with all the challenges that they are facing with little or no assistance at this point. >> thank you, and then in a previous statement as well, you mentioned u.s.-aid and that you didn't feel this was a priority in that they have other priorities. as we see the incidence of child

mortality decreasing, of course, it seems like we are going to begin to see an increase in disabilities, so can you -- do those two pieces have to be separate from each other? can we address mortality and then look at disabilities including autism jointly? >> yes, i think that's been an ideal situation. i mean, our perspective is they are interrelated and that we have heard from advocate friends and they would like to have survival ability without disability, and that's our ultimate aim m i think that makes a lot of sense, you know? it's an idea of not just being able to survive a disorder and disease as a child, but to be able to go on and realize your full potential as an adult. that's more difficult when you have to deal with disabilities.

i think we can get ahead of the curve and line it up with policies and not only address mortality issue, but look into the future. what do you do with children with disabilities and as time goes on? it helps us in terms of not only in the context of public health, but development in general for the country and our ability to address, you know, public health in a global health issue like autism, and other diseases. >> thank you dr. shih. you mentioned in your testimony about voice of america being able to go on to that radio and talk about autism. have you been back with voice of america speaking and beyond that, how have you found the media? are they a good partner in getting the word out? has the media been helpful, and if not, could you maybe talk to

us about how that would look if they were going to become a partner in this. >> voice of america -- they invited me, as a matter of fact, last april i was there, april 2 was autism awareness day. i was there, and they've been very helpful in passing the information around because the audiences in africa, and i get a lot of feedback from africa seeing me on voice of america. i've been back on voice of america, and i hope in the future they will keep inviting me, and we can have a close partnership. as far as where i've been on tv, they saw -- i'm going to use the word ignore rapt about the subject, but they don't know how to handle it. i think when you address these types of issues when it comes to

health, it's always important in africa when you have the approval of the minister of health or somebody in that department so when you go on tv and you -- the journalist of who is inviting you knows that you are working in the department of health. they give you enough time and a platform and everything you need to talk about your subject, but when you come as an organization, they are an organization talking about so many things that sometimes they don't give you enough time and in the communication is not very strong. i think by talking to the stake holder and the responsible parties that they will have enough time and the platform with the tv and the radio, and they will be more, you know acceptable. >> yeah, thank you.

as not really a follow-up, but another question. as a mother of a child with autism, can you tell us what tools have been most helpful to you in dealing with his disability? >> it's been very hard, and we try it all. we try supplemental vitamins and everything, but what has worked with us which is a little bit controversial is -- each child has its own situation, and one -- whatever works of one child might not work of the other, and in the case of vinny, it was so hard we were wrestling our child to take the medication. i was crying all the time. i said there's got to be a better way. the doctor said put it in apple sauce. after awhile that tastes like medication. the child doesn't want to take it. eventually we come across the

homoppatty who helped him. that worked for us. as a matter of fact, this lady is working with children in africa. if we find a way to bring these children with her, and she deal with them to see them, watch the children through a videotape, and then she has a questionnaire. there's a ware for her to -- there's a way for her to walk to the children. it's cheaper and more affordable and in africa, everything cheap is good; right? that's what she's doing right now. we started with a couple chirp to see how it goes among other treatment we're doing, but we have our challenges like, for example, the -- we have to take a break and things like that, but it's working, and eventually the parents said the chirp are more calm and quiet. that's one way, and of course you have your treatment and

regular nutrition medication and everything that we have over there. there's a pharmacy where they can get their medication to hope them cope with it. >> thank you. mr. mccool, in your testimony, and you talked about the e-web and the program, you talked about 900 educators being involved in it. is this just for educators and those involved in education, or is it more comprehensive than that? >> it is more comprehensive. it has communities for different segments. eden established the autism community as part of the e-web. the people i was referring to, i think we have about 1200 teachers that signed up and network with each other dealing with specific autism-related educational issues. >> are you aware of any other

programs similar to this, similar to ed-web. >> no, i think facebook and twitter and all those have been used by various people around the country, but we wound that this is so focus that it really helps people make a direct connection rather than having to go through a lot of, you know, other systems that you have to sort of navigate through with facebook and twitter and linkdin. there's a community of librarians who deal with school issues and there's a community for special education administrators so you're communicating on very specific meaningful topics, and it's one-to-one once you sign up. >> excuse me. thank you very much. i yield back, mr. chairman. thank you. >> thank you. mr. marino. >> thank you, chairman smith.

i apologize for being late. some constituents kept me longer than i anticipated. thank you for calling this hearing because it's critical. excuse me. i have two children with special needs, and i'm going to just pose a little scenario to the panel and ask if each one of you coiled respond to my question starting with mr. mccool. my son has been -- it's been suggested by a couple of physicians that he has a very mild form of autism, asperger, but there's other physicians who say, no, they're off the mark. how well defined are we and how in tune are we with diagnosis today of autism and the elements of autism. do you understand my question? >> yes. >> please.

>> autism is a diagnose where there's no medical test or blood test, so it's done by observation and sort of looking at the different categories. obviously, autism impacts that part of the brain that impacts speech and other communication behavior, those kinds of things. it doesn't impact iq, so i think obviously the expansion of the definition to include aspergers has impacted the numbers. i think what we see is if someone is diagnosed or suspected after having aspergers, the thing to do is to really look at their communication and is their communication system in tact? is it appropriate? that seems to be the most singular indicator, and because children, especially young chirp, have different levels of

development and so you don't really want to characterize someone or give them a label until you are pretty sure they're going to have it. if they are suspected to have aspergers at an early age, would you treat them differently now suspecting that and not saying they actually have autism? we basically -- or to say treat the person normally, let's see what happens. generally, when we get to the point where it impacts their behavior or socialization skills, then that's a bigger indicator than just language development. >> please. >> i think there's a lot more that need to be done as far as diagnosis is concerned. my experience -- the experience

i had with my child up to 4 years old, he was not speaking, and the nutrition said it's because i speak french, not to worry. this is here in america, not to say anything bad was done, but he lived here, and up to 4 years old, he couldn't tell me, and the physician i had went to canada on vacation, and the doctor there saw him because he was accompanying his cousin who just had a cold. the doctor just did the cold medication to his cousin and spent 45 minutes on my son and diagnosed him and faxed me the progress nose sis° prognosis. there's a lot more that needs to be done even though in the united states we are so far ahead compared to africa, but there's a lot that needs to be done. in my case, they had to do a brain map to know exactly what vinny's problem is and when we did that, the doctor said he was smart with a high iq, and i

shouldn't worry about the intelligence part, but the society part, having him live with everybody. spend your asset on that department, and that's what owe did. if you don't know that, you are all over the place trying to help them when it's expensive. you waste money to treat him on the wrong direction, so that's going to help us. the brain map help us a lot and where to put our efforts. as far as diagnosis is concerned, i'm grateful for what we have, but in africa, there's nothing. >> okay. doctor? >> as mr. mccool mentioned, diagnosis is largely behavioral these days and there's a tremendous amount among the population, and i think a well-regarded researcher from

the science school of medicine said that when we met one child with autism, he met one child with autism. it's difficult to generalize beyond the social deficits. saying that, there's these instruments, psychological instruments used and so the ability to discriminate an individual on the spectrum from individuals who are not is robust at this point. i think the question you ask about aspergers and all these subcat garys of autism are used to differentiate, you know, people who are perhaps verbal or nonverbal, disability versus those who are not, but i think those definitions are falling away as we learn more about autism. i think at this point, the new addition of the sm5, the bible for diagnosis, they will do away with all the subcategories and

just one disorder, so all the things previously talked about, high functioning and low functions aspergers and so on is all part of one diagnosis. this is consistent with evidence we have so far. you know, we have individual -- we're not appreciating the individual who are nonverbal have very rich upper life, very robust intelligence, but they don't have the faculty to express themselves well, whereas there's people who have, you know, average or above average faculties, but have tremendous amount of issues, you know, intellectual disabilities as well as social interactions, and certainly these categories, these labels you put on children doesn't always predict an outcome. there are many individuals who seem to be very challenged in early parts of life, but come out having productive lives,

where others don't make as much improvement. as we learn more about autism, i think the more we appreciate really it is a very broad spectrum of disorders and that siewfn what we say now as autism as one disorder, just talking about cancer, there's a big collection of disorders, but there's individual types of cancer that require different treatment approaches. >> thank you, i yield my time. >> i'll ask a final couple questions. mr. mccool, in your testimony, you talked about the teaching students with autism effective strategies for grades k-5 and effective strategies for 6-12. one of the things we've all come to a better understanding is that unlike other disabilities, mental, emotional, whether it be that autism is in a league of

its own, a category, a teaching where unless the teachers are very specifically trained, it is very difficult to meet the challenges, and i'm wondering, you know, in her testimony, she said that there are three primary problems, lack of awareness, lack of education, lack of availability of proper treatments. in the united states where we grapple with this for several years, we still have not trained the teachers in a way that's dealing with the problem and the challenge that we face. i'm wondering if the teaching youth can increasingly be exported to africa and exported either via the web or training seminars or bringing people to princeton, the eden institute, or similar institutions so there's a teacher initiative to meet this challenge? >> absolutely. that certainly is the model that we're advocating.

with webinars, they can be live so they can be interactive. they can be rebroadcast later so people can look at them. i think one of the biggest issues with autism training is back to the certification. most teacher education programs do not have the specific autism certification track. california has passed legislation that has defined specific certification in autism that requires both instruction and course work and a practicum and that process has begun. a lot of the courses are available online so people can get them. the motivation for this is obviously to be a better teacher, but also there's

inventives built into pay increases for people who achieve higher levels of certification. i'm not aware of any other states right now that have that same process in place. we are working with newman university in pennsylvania looking to establish a similar process in pennsylvania even though there's no state law that defines it, but building on what california has done looking at the same course work, the same kinds of things. what people look at in terms of autism certification is a national certification, board certified behavior analysts, and this is a very rigorous training program. the ma majority of people believe if you get the certification that you have acquired skills that make you proficient in dealing and teaching children and adults with autism, and it's, again, very rigorous. you have to take coursework and

do about 1500 hours in a year of practicum under the supervision of another cbva. we use that model. we have them at eden, and we look at them to train the aba therapists. there is no real certification for an aba therapist, people who work in residential or employment programs, but the teacher certification for autism right now is just something that's emerging more and more. colleges and universities recognize the need for it, and there are, you know, several proposals out there. cane university in normings just established one as well, so i think it's not a normal -- it's so behaviorally intensive that regular college coursework doesn't really equip people to be effective aba therapists.

>> thank you. let me -- [inaudible] >> i would just add to thatment i think that's one the major challenges to identify, to train professionals to really meet the needs, and i think in less on the mystic moments you wonder if you with train enough people to meet all the needs out there. fortunely, in recent years there's research done where people are training non-specialist as therapists in taking care of children, and that includes parents. there's been several really well-designed studies published that demonstrate non-specialist parents, one working with an expert can actually faithfully deliver intervention at home for their children, and we see this essay as a possibility in terms of our international development because, number one, it empowers the parents and every parent

knows their child the best and knows their needs, and you give them the tool set to better manage behavior, develop, and learn the way they need to learn, and the second thing is that you can even do these kind of training via the internet. this is learning technology. again, there's been recent publication demonstrating that. there's no difference when you train professionals via the net versus the in-person setting. you get the same expertise comes out of your class and providing tools for the family. there's reason for hope. >> thank you. again, dr. shih, you mentioned in your testimony, and it's worth quoting again, 67 million people or 1% of the world's population is affected with some form of asd, it's higher than aids, diabetes, and cancer

combined. directer of the mental health world health organization in his -- this is part of the record -- says tens of millions of people are estimated to be affected in after africa only. you talked about the numbers in south korea being higher. when we study it, it's the tip of the iceberg phenomena where it's worse than we thought. i'm wondering again, and i asked this earlier, but i ask you with emphasis because i have raised it at the u.s. agency for international development, this needs to be made a priority, and i hope it becomes one in the global health initiative because we have a, you know, pandemics are reserved for infectious diseases, but with quotes around it, it is a pandemic largely unrecognized, and it's about time and our hope is with the hearing to begin with vigor and a fresh set of eyes to make this

a global effort with our tax dollars which heretofore has not been the case. i say that in the late 1990s when i introduced the assure act, cdc was spending $287,000 per year for five successive years. that doesn't buy a desk. that doesn't buy anything of value, and then they got into it, and obviously as a result of the legislation. we're now spending $22.1 million. regards to nih, we were spending $10 #.5 million. now we're spending in 2010, $160 million, so, you know, when we chronical, prioritize, the money will follow, and hopefully the good work that that money buys will make a difference in the lives of people, and i do have

one final question. i read a book called "dancing with max" with emily colson. i invited her up, and she talked to the members of the autism caucus, and here was a case, and perhaps, mr. mccool, you want to speak to this as well. we are still focused on early intervention and what do we do with the young people, help them have a productive life and help the suffering of the heroic parents faced with severely autistic children, a very, very challenging life, and i'm wondering with the aging out issue in the book, emily tells the story of how her husband left by the time max was 9, she had had it, but then through the grace of god and it really was through prayer and a lot of help of people around her, she got through it, and now max is approaching adulthood, and the

important renne min that goes along with formal schooling goes away, and she made an appeal to congress, and i know autism speaks has been making this appeal very robustly autism society and mr. mccool, you are a part of it, and making that as well. what do we do now with the young adults to ensure that their lives and the quality of life does not diminish? i'm wondering if you can speak to that. obviously there's international implications as well as domestic ones for those children. anyone want to touch on that? >> sure. one thing i learned about talking with the stake holders around the world is the concerns of the parents what they want for their children is all the same; right? the best possible life for them and so on, and so the idea of being able to help them to achieve those objectives i think is very worthwhile. you know, the idea that the

individuals and families can benefit from awareness and research and delivery is really not a very ambitious goal. i think it's actually within the reach of most societies. i think it's been talked about in this particular committee meeting, you know, i think it takes political will. it takes understanding and knowledge, awareness of the issues, and it also takes understanding that you don't really need to invest a tremendous amount of money to make a difference; right? so that oftentimes the quality of life issue can be robustly addressed with the right investments, strategic investment of resources and expert assistance, so i think it is really important for this committee to help the global community to think about what are the possible solutions? what can we do? we're not looking for charity,

per se, but empowerment and the ability to help them to help themselves. >> i just want to say something about the training, you know, and tie it up with this. what i want to say is i hear all these numbers that you are talking about, and i have just -- i go, oh my. in after africa, it doesn't take much to do a lot. just an example -- in 2009, i sent a thousand dollars to autism. with that thousand dollars, they were able to have two volunteers, french aba professionals that gave their time, that were not paid for what they were doing, but we were able to put them in a hotel, little things like that. within a week, they trained few teachers and a few care givers. now, this is not a lot, but it's

a small step that can be taken and add up to that little by little every so often, six months or a year, you can have a good team of people, you know, with some tools to help. it's always hard when you want to have something on the bigger level and add, you know, come with all these big strengths, but start small, create centers, you know small centers. they don't have to be very sophisticated, but where they can go and get information and where the communication can come from. i just want to add that. >> well, i think we have to remember that until 1975, children with disabilities were not entitled to a free, appropriate education, and so a lot of the strides we see with early intervention services and with education are because of that legislation. it has put some teeth into the law, so when children graduate from that educational system and

become difficults with disabilities, particularly adults with autism, that same level of support is not available, and, in fact, many times the huge investment that's been made with behavioral therapies, speech therapy, occupational therapy disappears, the effectiveness of that disappears as the child becomes an adult and cannot be sustained, so we recognize that all of the children diagnosed with autism now will be adults with autism in the future, and we have to look at housing. we have to look at support for them. we have to look at employment for them, and right now i think a lot of strides are made to sort of look at the kinds of employment, the kind of jobs that align skills that people with autism have. i know years ago when bittersweet farms was started as a model program, it fell out of

favor because it was seen as an isolationist program or segregated program putting people on the farm. what i see today is a growing number of farm programs, and obviously, it's the model in ireland with an agriculture culture, but even in our country, the farming, small farms are coming back, they are employing people with autism who enjoy that kind of work. it's very repetitive, it's the kind of work that aligns skills with certain people with autism and the duties and responsibilities of the employment, so i think our challenge is to look at how, with the resources that we have, children age out of school so there's a population constantly leaving childhood and entering childhood, but the adult program, adults with autism are living normal life spans, and so

right at eden at this point, we have group homes and apartment programs, residential programs, and some of those guys have gotten up to their 60s, and we're looking at what is that next step? what kind of support can we provide them? i think the model that we had with the education and the children's act in 1975 really set an example of what can be done to help adults with dates and particularly autism as we go forward. the numbers are big, and we have to look at various streams of funding that can help provide that support, and enable them to be productive in working to help support themselves. >> the ranking member of the subcommittee. >> thank you very much, and thank you for prolonging the hearing so i could at least get here in time. i think it was -- i thought he

was in the senate filibustering, but i appreciate that, having the opportunity to be here. i had a long standing engagement which i was up able to alter, but let me take the indulgence of the committee for a brief opening statement. it maybe past tense now because you testified, but we looked at your testimony, and i'm aware of what each of you had to say, but i certainly began my statement by thanking chairman smith and certainly let me recognize his longstanding leadership on this issue both domestically and globally. i would also welcome our esteemed witnesses today and look forward as the testimony that you've given and my staff heard and that we looked at earlier on autism globally and how proposed interventions would coexist and complement our

efforts to prevent africa's leading disease killer, mainly hiv and other diseases, as we had the answers already, but issues and impacts like this and so many others are left unintended to. autism identified by impairments in communication and social interaction is identified in early childhood around the age of 3. imagine the news that one's child as you must have experienced faces the challenges of autism and the devastation of hearing that this has beset your young child. fortunately here in the united states and in other developed countries, progress has been made and our efforts to detect and treat those with the disorders, however, we still have a long way to go as you mentioned in your testimony --

[inaudible] i never would have said it so nicely, kobenan, but you testified as you had to leave this region of the country and as you leave washington dc and this environment in west virginia that we have the most appropriate attention given and resources, but you chose to move to arizona because you knew that they were better services and so we can just imagine how in a developing country where many, many, many needs are that autism

certainly is an issue that seems to be and mental health in general, tends to be put on the back burner rather than the diseases we hear so much about. in the u.s., the private resources available to impact families to better cope with the disease, but sadly the same support structures in developing worlds do not exist in low and middle income countries due to lack of funding and a lack of understanding of the diagnosis of the disorder. there's populations battling mental dates in if other countries furthering combating health, communities, and government. the united nations have taken important steps to ensure equal rights of those with disabilities including in 1981 the declaration of the united

nations for the international year of disabled persons and established the united nations decade for disabled persons in 1973-1992. the u.n. then expanded the universal declaration of human rights to include people with disabilities, some 35 years after the declaration was adopted, and the united nations reaffirmed equal rights with people with disabilities particularly the convention of the rights of people with dates and declaredded on april 2, world autism awareness day, and so many times there is, and actually, they really moved forward in addressing the problems with the framework for action to meet basic learning needs which calls on governments to pay special attention to the learning needs of the disabled and take steps to provide equal access to education for every

category of disabled persons as an integral part of the educational system, concept for equal education for disabled people endorsed by several countries through the ratification of numerous agreements and so although we do hear criticism of the united nations, i think that many issues would have gone unspoken throughout the world if it were not for the united nations going back 40 years ago, recognizing that countries, especially in lower and middle income countries, would not raise the issue of disabled when they had so many other basic issues like clean water or malaria so i do commend them for that. there are certainly, as i mentioned a lot of private resources available for impacted families to better cope here in the united states with the

disease, support, sadly though, the same support structure in other worlds does not exist due to inadequate funding and a lack of understand og or diagnosis of the disorder. often there's the pop pew ligs neglected further compounding the burden of poverty and weak health systems on families, communities, and governments. the united nations have taken the important steps, however, the right to educate remains unattained for many autistic children in a developed world. while the united nation's actions are commendable, others fail to address the needs of their autistic population. in middle and low-income countries, there's only one child psychiatrist for every 4 million people. that's unbelievable. i look forward to what you have

said and has been recorded, looking at low cost interventions, given their limited state budgets and overburdened in public health systems which developing countries can apply and to better deal with the issues of autism within their borders. we know that there have been a number of several journal of international association on special education founded chirp with autism in africa do not share the same behavioral signs as the western counterparts which was interesting, such as rocking back and forth. it seems geographic and environmental differences impact the way the disorder manifests itself which makes it even more difficult because it's not going to be one kind of a treatment covers all, and it's -- the -- i look forward to how we might be

able to work along with the fact that there are different signs. furthermore, we know from the haiti earthquake and other examples that in crisis situations, those with dates are often inadequately cared for. we know that this is a big problem, and so i once again would like to join with the chairman in certainly thanking you for your appearance here and also that -- for your interest. i have a quick question or to since i almost exhausted my five minutes. i don't know how to tell time. there appears to be limited information about the prevalence of autism worldwide especially in africa. what do you know about it in a nutshell about how widespread this disorder is in the world and in particular in africa, and

what are the greatest challenges in conducting autism prevalence studies abroad, so if any of you want to take a stab at that. >> sure. so the challenges of conducting prevalence study in africa is actually similar to elsewhere. it's about informing the community, informing the stake holders so they understand what you are trying to do and they work with you. when you have community buy-in, you generate the highest quality data, and the greater challenge i think for working in the territory in africa is actually the second act. to do a study in the community is one thing, but trying to figure out what you're going to do with individuals in a study is something completely different and requires a commitment not only to the vines and families, but also a commitment to change community, society, and governments, and

that kind of work takes a long time. it takes a lot of resources. it takes a lot of focus, but at the same time that kind of policy change will be meaningful only if you have real solutions on the ground, the idea you want to support, nurture, and grow solutions that are working for families on the ground so going through any low developing country, you have to really approach it from a top-down as well as a bottom-up perspective. you need the top-down so the solution is developed from the bottom-up is sustainable and integrated as a meaningful solution in the national public health system in longer term. >> i said with a minute to go, and i'll say it again. one of the basic, basic challenge that we have, that i came across is centers.

you know, you can have a program to teach teachers, to educate stakeholders, and all of that, but once the whole team is gone, whether it's in the united states, you teach the peach and they leave, where do they go for more information? everybody has a house. they need a house that's the center. it doesn't have to be sophisticated, but that's the major challenge. once they have the little centers, they can go there, get information, and if anybody has any questions, they can go there, have a small staff member that works part time and just walk there to educate people and to have a place to go. that's the first step. >> would you think the church community or other organizations in africa could be a center if there's an educational campaign to educate the religious

community and simply ask their parsonage or some part of the building could be used for that? >> yeah, that's a great point. indeed, that can be a solution, and when i said center, it doesn't have to be a building. it can be those things too. for example, the ex-wife of the ambassador of liberia and, you know, get them to be involved, and she got involved. her solution was to talk to one of her church pastors and see if he can give her part of the building, and indeed, within a year, she was able to do that, and she told me that the center actually was created, so that's a very good suggestion too. >> we might even go further and ask our u.s. department of state if as u.s.-aid as they move forward on this that we might prod them on this issue and suggest to them their ambassadors and they all have

projects that they can fund, little stipend they could do, and they don't need that, but ambassadors' wives could have the women perhaps of the country and encourage them to have a meeting and then encourage the african community to therefore approach the high remark ky of the church. i think as you mentioned, we don't need a lot of money, just have to use the resources, and everybody needs a home, you're absolutely right. because i was late and have taken enough time, i yield back and will ask no other questions. thank you very much. >> thank you, mr. chairman. just as a brief follow-up, mrs. kobenan, you mentioned your son and the brain mapping that was done, and it really seemed to shed light on what his

strengths were and difficults would be. can you expand on that? >> it's an ekg that they put a lot of -- how you call this -- electrodes on his head, and then he has to stay still, and they do a map. they kind of read the activity on his brain over a period of time. it's very expensive. we had it in arizona, but it's so helpful. i wouldn't suggest that for every family if they have to come up with the money out of their own pocket because this cost us $3500, and if they can have the insurance, some kind of help, that would be very helpful because it really tells you right from the start whether you should plan on putting your child in the facility where he will be 24/7 taken care of by people, or if he can take care

of himself when he grows up. you can start investing money for a good facility for him or invest your money into activities for him to help himself. that gives you a road map right from the start, and we were lucky enough to come across a doctor who did that. >> anyone have anything to add to that? dr. shih? is it not covered by insurance? >> not at all. >> it's an egg? >> an ekg. >> i think it is the egg. >> egg? hoe. >> it's similar for other brain functions. thank you very much. i yield back, mr. chairman. >> mr. marino? >> i'd like to thank -- would the witnesses like to add anything further? i would like to thank -- ms.

cassidy, thank you for your testimony from ireland. this captures why we are so concerned. he noted in the testimony as child mortality decreases, simple math predicts an increase in the number of children with developmental disabilities. instead of seeing autism as two distinct public health challenges, but should be tackled as parts of the same problem. he says -- you said a few moments ago, autism speaks to our partners around the world and by addressing autism and related disorders now, south africa and other developingies get ahead of the curve and maximize outcomes for individuals and families and minimize long term costs to society. we have a pandemic with autism. hopefully, we can launch and do much more with the global health initiative and all the other related efforts at the u.n., at the countries specific level to

mitigate this devastating developmental disorder. i thank you, and the hearing is adjourned. .. [inaudible conversations] [inaudible conversations] [inaudible conversations] [inaudible conversations] [inaudible conversations] [inaudible conversations]] [inaudible conversations]

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>> today the house began work on the 2012th homeland security department. this afternoon members continue work on the subtle legislation. we spoke to a capitol hill reporter about the measure. >> congressional quarterly is the case. house republicans brought up the homeland security appropriations bill as the first to come out since they got control of the house. what's in this bill and is a hint about priorities? >> well, it's about spending parodies they are serious about reducing government spending. in the bill itself contains over a reductions to the department has a very specific type that even republicans such as the

committee chairman peter king are particularly happy about. >> out out of spending levels in this budget compared with past budgets? >> a 3% reduction in overall when you look at discretionary spending at a 7% reduction to get down to 40.6 billion. >> can you tell us what to do so? what are the key programs that are funded? >> well, the homeland security department is the transportation security administration, coast guard, secret service, >> , border patrol all lumped in the same department. other programs being funded, probably the issue that will get the most attention is the fact that the department provides a lot of annual money to state localities and homeland security cramped funding and that's actually targeted for a pretty big cuts still. >> allows for unlimited germane amendments. are there any more closer look?

>> actually tears a bill that contains a proposal to cut 2.1 billion from grants that would reduce it to a total of 1 billion there're people who are nervous about the way the grants would be set up being one big pot with no clear indication of how specific grant programs are funded. the public can incumbent peter king and democrat nita lowey of new york have filed an amendment that would reverse that. so that probably is one of -- going to be one of the amendments that would be a great deal of focus and debate. >> was supposed to the legislation what can we expect to hear from them? >> you know, because it is the homeland security department has so many different levels to it and so different components, who was opposed to it and who is in favor really does depend on what particular program you're looking at.