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. ..

>> we are told that the autism resource organization has shut down during the crisis. again, kids are put on hold while political problems are deteriorating to violence. if you can speak to the setbacks, and there needs to be a separate focus on what do we do in conflict areas? there needs to be awareness of the special needs of that of an

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 the first autism 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