[House Hearing, 112 Congress]
[From the U.S. Government Publishing Office]





     GLOBAL PERSPECTIVES ON AUTISM--A GROWING PUBLIC HEALTH CRISIS

=======================================================================

                                HEARING

                               BEFORE THE

                 SUBCOMMITTEE ON AFRICA, GLOBAL HEALTH,
                            AND HUMAN RIGHTS

                                 OF THE

                      COMMITTEE ON FOREIGN AFFAIRS
                        HOUSE OF REPRESENTATIVES

                      ONE HUNDRED TWELFTH CONGRESS

                             FIRST SESSION

                               __________

                              MAY 31, 2011

                               __________

                           Serial No. 112-65

                               __________

        Printed for the use of the Committee on Foreign Affairs








 Available via the World Wide Web: http://www.foreignaffairs.house.gov/

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                      COMMITTEE ON FOREIGN AFFAIRS

                 ILEANA ROS-LEHTINEN, Florida, Chairman
CHRISTOPHER H. SMITH, New Jersey     HOWARD L. BERMAN, California
DAN BURTON, Indiana                  GARY L. ACKERMAN, New York
ELTON GALLEGLY, California           ENI F.H. FALEOMAVAEGA, American 
DANA ROHRABACHER, California             Samoa
DONALD A. MANZULLO, Illinois         DONALD M. PAYNE, New Jersey
EDWARD R. ROYCE, California          BRAD SHERMAN, California
STEVE CHABOT, Ohio                   ELIOT L. ENGEL, New York
RON PAUL, Texas                      GREGORY W. MEEKS, New York
MIKE PENCE, Indiana                  RUSS CARNAHAN, Missouri
JOE WILSON, South Carolina           ALBIO SIRES, New Jersey
CONNIE MACK, Florida                 GERALD E. CONNOLLY, Virginia
JEFF FORTENBERRY, Nebraska           THEODORE E. DEUTCH, Florida
MICHAEL T. McCAUL, Texas             DENNIS CARDOZA, California
TED POE, Texas                       BEN CHANDLER, Kentucky
GUS M. BILIRAKIS, Florida            BRIAN HIGGINS, New York
JEAN SCHMIDT, Ohio                   ALLYSON SCHWARTZ, Pennsylvania
BILL JOHNSON, Ohio                   CHRISTOPHER S. MURPHY, Connecticut
DAVID RIVERA, Florida                FREDERICA WILSON, Florida
MIKE KELLY, Pennsylvania             KAREN BASS, California
TIM GRIFFIN, Arkansas                WILLIAM KEATING, Massachusetts
TOM MARINO, Pennsylvania             DAVID CICILLINE, Rhode Island
JEFF DUNCAN, South Carolina
ANN MARIE BUERKLE, New York
RENEE ELLMERS, North Carolina
VACANT
                   Yleem D.S. Poblete, Staff Director
             Richard J. Kessler, Democratic Staff Director
                                 ------                                

        Subcommittee on Africa, Global Health, and Human Rights

               CHRISTOPHER H. SMITH, New Jersey, Chairman
JEFF FORTENBERRY, Nebraska           DONALD M. PAYNE, New Jersey
TIM GRIFFIN, Arkansas                KAREN BASS, California
TOM MARINO, Pennsylvania             RUSS CARNAHAN, Missouri
ANN MARIE BUERKLE, New York












                            C O N T E N T S

                              ----------                              
                                                                   Page

                               WITNESSES

Mr. Andy Shih, vice president of scientific affairs, Autism 
  Speaks.........................................................     5
Ms. Arlene Cassidy, chief executive officer, Autism NI...........    12
Ms. Brigitte Kobenan, founder, Autism Community of Africa........    21
Mr. Tom McCool, president and CEO, Eden Autism Services..........    25

          LETTERS, STATEMENTS, ETC., SUBMITTED FOR THE HEARING

Mr. Andy Shih: Prepared statement................................     9
Ms. Arlene Cassidy: Prepared statement...........................    14
Ms. Brigitte Kobenan: Prepared statement.........................    23
Mr. Tom McCool: Prepared statement...............................    27

                                APPENDIX

Hearing notice...................................................    54
Hearing minutes..................................................    55
The Honorable Christopher H. Smith, a Representative in Congress 
  from the State of New Jersey, and chairman, Subcommittee on 
  Africa, Global Health, and Human Rights: Statement by Dr. 
  Shekhar Saxena, director, Department of Mental Health and 
  Substance Abuse, World Health Organization.....................    56

 
     GLOBAL PERSPECTIVES ON AUTISM--A GROWING PUBLIC HEALTH CRISIS

                              ----------                              


                         TUESDAY, MAY 31, 2011

              House of Representatives,    
         Subcommittee on Africa, Global Health,    
                                   and Human Rights
                              Committee on Foreign Affairs,
                                                    Washington, DC.
    The subcommittee met, pursuant to notice, at 2 o'clock 
p.m., in room 2172, Rayburn House Office Building, Hon. 
Christopher H. Smith (chairman of the subcommittee) presiding.
    Mr. Smith. Good afternoon, everyone. And welcome to our 
witnesses and those who are joining us for this first ever 
congressional hearing examining the magnitude and the severity 
of the global public health crisis of autism.
    Autism, as I think more and more people are aware of, is a 
complex neurodevelopmental disorder that impairs a person's 
ability to communicate and to relate to others. The condition 
is often associated with rigid routines or repetitive 
behaviors. Autism is a spectrum disorder that affects each 
individual differently. The types and severity of symptoms vary 
from case to case and range from mild to extremely profound.
    According to the Centers for Disease Control and 
Prevention, 40 percent of children with autism spectrum 
disorder do not talk at all, and another 25 to 30 percent speak 
some words at 12-18 months but then lose that speech. Autism 
occurs in all racial, ethnic and socioeconomic groups but on 
average affects four to five times more boys than girls.
    I actually became involved and immediately concerned with 
autism back in 1982, when I visited with Dr. David Holmes, the 
founder of Eden Institute, now Eden Autism Services, in 
Princeton, New Jersey. I am very pleased that Dr. Tom McCool, 
Eden's current CEO, will tell us today 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 in my congressional district, Bobbie and Billy 
Gallagher, told me of their concerns about a perceived 
explosion in the prevalence of autism cases in Brick Township. 
After that meeting, I requested that the Centers for Disease 
Control and the Agency for Toxic Substance and Disease 
Registry, or ATSDR, conduct an investigation, which revealed 
that the prevalence of autism in Brick, 1 in 149, was indeed 
much higher than what was generally believed to be the 
prevalence.
    As a direct consequence of the Brick study and CDC's 
admission that there were no recent prevalence studies in the 
United States with which to make a comparison, I introduced 
legislation to authorize grants for autism and pervasive 
developmental disabilities surveillance and to establish 
centers of excellence in autism and pervasive developmental 
disabilities epidemiology. This legislation, the Autism 
Statistics, Surveillance, Research and Epidemiology Act, or 
ASSURE, introduced in 1999, was incorporated into Title I of 
the Children's Health Act of 2000, which also established the 
centers of excellence in autism research in NIH and created the 
Interagency Autism Coordinating Committee.
    To continue to monitor implementation of these new Federal 
autism programs, I established in 2001, along with my colleague 
Mike Doyle, 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 an ``autism education, early detection, and 
intervention program'' to improve early screening, diagnosis, 
interventions, and treatment for ASDs.
    Just last week, I introduced, along with Mike, a package of 
three comprehensive autism bills: The Combating Autism 
Reauthorization Act, or H.R. 2005, which will ensure 
continuation of the important Federal autism programs for 
education, early detection, surveillance and research; the 
National ASD Initiatives Act, or H.R. 2006, 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 Services 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 that on a trip to Lagos in 
Nigeria in 2007, which was designed to look at an issue that I 
also work very vigorously on--human trafficking--while there I 
met with Mr. Chiti Azuwa, the parent of an autistic child. Mr. 
Azuwa is the Executive Director of the
    Public-Private Partnership Resource Centre in Abuja, and 
his wife, Dr. Doris Azuwa, is the Executive Director of the OLG 
Health Foundation and Autism Centre in Port Harcourt. They told 
me of the large numbers of Nigeria, children suffering with 
autism, and the lack of government or other supports.
    As a result of my discussions with the Azuwas, I introduced 
in February of 2008, the Global Autism Assistance Act, or H.R. 
5446, which directs the Administrator for the U.S. Agency for 
International Development to establish and 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 the progress that has been made in recent 
years and increasing awareness, and particularly in some of the 
more developed countries in improving services and treatment 
for autism. However, I would note at the same time we must take 
seriously the World Autism Organization's assessment that in 
every part of the world the situation for 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. Here in the United States, 
CDC estimates that close to 1 percent of the population is 
affected by NASD. Autism Speaks, the Nation's largest autism 
science and advocacy organization, describes a scientific 
consensus that 1 percent 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--and I will include their testimony and hopefully 
at a later date they will testify as well--but in their 
submission they note that ``tens of millions in Africa are 
affected by autism.'' Tens of millions.
    In that context, autism is a developmental disability 
pandemic. It is largely under-recognized, underappreciated in 
its impact, and under-resourced. 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 may multiply many times the level 
and intensity of required care.
    In developed countries, autism can overwhelm families, as 
their lives become consumed with the considerable challenges of 
identifying appropriate biomedical and psychosocial treatments, 
schooling, and other needed support systems for their autistic 
child or children and eventually for an 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 in 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, to advocate for the inclusion of developmental 
disabilities in national and state health policies to increase 
the availability of quality of services across a continuum of 
care and across the life span, and to continue to support 
scientific research that will lead to more effective treatments 
and one day to effective strategies for prevention.
    The benefits of international collaborations and 
cooperation are multidirectional. In fact, I am looking forward 
to learn about Northern Ireland's Autism Act of 2011 from 
Arlene Cassidy, CEO of Autism Northern Ireland. I am pleased we 
will have Ms. Cassidy join us today, and she will be speaking 
to us very shortly. I and the other congressional autism 
cochair, Mike Doyle, signed the memorandum of understanding 
with the Northern Ireland Assembly to share information to 
support common interests regarding autism.
    In addition to Tom McCool and Arlene Cassidy testifying 
today will be Brigitte Kobenan, founder of the Autism Community 
of Africa, and Dr. Andy Shih, vice president of scientific 
affairs for Autism Speaks. We are all looking forward to 
hearing the valuable perspectives that each of our witnesses 
brings 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 have been informed that Don Payne, who is our ranking 
member, is en route, will be here hopefully within a half hour 
to an hour. I guess he ran into some delays at Newark Airport. 
But he will be here and we will be joined by other members as 
the hearing progresses.
    I would now like to ask our distinguished witnesses to come 
to the witness table and I will begin with their introductions 
at this point.
    We will begin with Mr. Andy Shih, who is the vice president 
for scientific affairs at Autism Speaks. Autism Speaks, as I 
think many people know, is the Nation's largest science and 
advocacy organization 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 advisory 
committee, senior staff, and volunteer leadership to develop 
and implement the organization's research program. He focuses 
on things that include genetics, environmental sciences, and 
epidemiology. He also leads Autism Speaks' International 
scientific development efforts, including the Global Autism 
Public Health Initiative, an international advocacy effort that 
integrates awareness research and scientific development.
    I would 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 that legislation was enacted. And I congratulate you 
on your extraordinary advocacy. Senator Santorum's bill, which 
did become law, and which passed both the House and Senate, 
obviously, was a great credit to your organization as to how 
well you helped to bring that about. So I congratulate you.
    We will then hear from Ms. Arlene Cassidy, who is the CEO 
of Northern Ireland's autism charity known as AutismNI. She has 
specialized in autism spectrum disorders for 20 years and has 
provided the research, service development, and strategic lead 
for AutismNI, or Northern Ireland, in the development of an 
internationally acclaimed early intervention program for 
autism, including a catalog of academic research and published 
journal articles. She has also led the establishment of the 
charity as an accredited training agency, as well as an 
effective agent for social change through a community 
development and partnership ethos, which has provided the 
foundation for the charity's family support services and an 
effective political lobby for a dedicated Northern Ireland 
Autism Act, which was signed into law in Northern Ireland.
    We will then hear from Ms. Brigitte Kobenan, who was born 
in Cote d'Ivoire and moved to the United States over a decade 
ago. In 2004, Brigitte's first child Vinny was diagnosed with 
an autism spectrum disorder. Despite a well established life in 
DC, she and her husband moved their family to Phoenix, Arizona, 
so their son could receive the appropriate treatment for his 
condition. Vinny subsequently improved and was able to live a 
much better life. Back in Maryland, Brigitte founded the not-
for-profit organization Autism Community of 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 Cote d'Ivoire and was 
elected Mrs. Congeniality World 2008. This title has given 
Brigitte a rare opportunity to speak around the world about 
autism awareness in Africa. Thank you so much for being here.
    Then we will hear from Mr. Tom McCool, who is president 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 Autism Services provides a 
range of community-based services to meet specific needs 
throughout the lifespan. Mr. McCool is also founding 
commissioner of the National Commission on 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 
currently is a member of the Autism Society of America, and is 
serving as Treasurer of the National Association of Private 
Special Education Centers. He is also the chairman of the Board 
of Autism Services Group. I don't know where he gets the time.
    Mr. Shih.

   STATEMENT OF MR. ANDY SHIH, VICE PRESIDENT OF SCIENTIFIC 
                     AFFAIRS, AUTISM SPEAKS

    Mr. Shih. Thank you, Congressman Smith and members of the 
subcommittee, for this opportunity to share with you Autism 
Speaks' global perspective on autism. I am Andrew Shih, vice 
president of scientific affairs at Autism Speaks, where I 
oversee the etiology portfolio, including research in genetics, 
environmental sciences, and epidemiology as well as lead our 
international scientific development efforts. I am a molecular 
biologist by training and have had the honor and pleasure of 
serving in the autism community for the past decade.
    As Congressman Smith mentioned, ASD transcends geographic, 
economic, and cultural boundaries. Current scientific consensus 
is that 67 million people, or about 1 percent of the world's 
population, is affected with some form of ASD, a prevalence 
that is higher than AIDS, diabetes, and cancer combined. While 
there is currently no known medical cure for autism, behavioral 
treatment programs can be quite effective, particularly when 
diagnosis is made early and subsequent interventions are begun. 
This growing recognition around the need for better screening 
or treatment has led groups such as the American Academy of 
Pediatrics to mandated autism screening for all children 
between 18 and 24 months of age. The success in improving care 
in both North America and Europe also make it clear these 
approaches can be adapted and extended to countries around the 
world.
    Unfortunately, today, in most of the world, early autism 
diagnosis and intervention remain more an aspiration than 
reality. A major barrier to improving the health and well-being 
of families and individuals is the lack of expertise and 
capacity to diagnose this disorder and deliver appropriate 
interventions. Without expertise and capacity, solutions that 
improve the quality of life for individuals with ASD and their 
families remain out of touch. In many countries, there is 
little awareness and simply no autism service providers. As a 
result, affected children and families do not receive proper 
care and support, and opportunities for a better outcome and 
improved quality of life for the families are lost.
    To address this global public health challenge, in 2008 
Autism Speaks launched the Global Autism Public Health 
Initiative, an ambitious international advocacy effort to 
provide support to other countries in order to enhance public 
and professional awareness of autism and to increase capacity 
to enable early detection and intervention as well as research.
    Built around the core value, of sense of urgency, 
scientific excellence, and the benefits to individual and 
families touched by autism, Global Autism Public Health 
Initiative, or GAPH, provides technical expertise and support 
to our partners to help realize their vision of progress. We 
collaborate broadly and inclusively with stakeholders at all 
levels, such as health and education ministers, expert 
clinicians and scientists, as well as parents and families, 
because we recognize the development and implementation of 
meaningful and sustainable program solutions require local 
leadership and ownership.
    GAPH's strategies and content are continually informed by 
the latest research in clinical and dissemination science. In 
addition, experience we gained and the data we collected from 
GAPH programs will help us advance and refine autism science 
and inform future policy and service development. Indeed, 
benefits from GAPH-related activities are expected to 
reciprocal--with greater international collaboration there will 
be new insights into causes, including environmental factors, 
sociocultural influences on diagnosis and treatment, education, 
and service development--answers that will help affected 
individuals and families the world over, including those in the 
United States.
    Autism Speaks currently supports GAPH-related activities in 
23 countries on six continents, and these collaborations are 
already yielding impressive returns for our community both here 
and abroad. We have assisted countries like Brazil, Mexico, and 
Qatar in developing their own awareness campaigns and 
establishing recent collaboration with U.S. scientists. We are 
supporting governments like Albania and Ireland in their review 
and development of autism-related national health policies and 
programs. As an official NGO partner of the WHO, we are working 
with Geneva and a number of health ministries in Southeast 
Europe and Southeast Asia to develop and implement regional 
collaborative health networks focusing on awareness and 
training. In fact, Autism Speaks and the WHO are collaborating 
with the Bangladesh Prime Minister's office as well as the 
Ministries of Health, Education and Social Welfare to host an 
international conference this July in Dhaka to officially 
launch GAPH-Bangladesh and to bring together like-minded 
stakeholders from India, Thailand, Sri Lanka, Bhutan, and 
Maldives to explore regional coordination and collaboration.
    Finally, the recently published first ever autism 
prevalence study in South Korea reported a stunning prevalence 
of 2.6 percent, with many previously unidentified cases found 
in the mainstream schools. In addition to the potential 
implications for environmental sciences research, the 
differences between the case-finding methodology used in the 
Korean study and the one deployed by the CDC to monitor 
prevalence in the U.S. raise important questions about the 
robustness of our statistics, and if we are actually 
underestimating autism prevalence in these United States.
    It is important to note that prevalence and other public 
data on autism that can guide policy and services development 
is not available for most of the world. By one recent estimate, 
over 90 percent of autism research is conducted on about 10 
percent of the global community. By supporting GAPH-related 
activities and research like the Korean study worldwide, Autism 
Speaks is helping to bridge that knowledge gap, to inform 
policies and development, enhance the evidence base and, as a 
result, narrow the service gap.
    In South Africa, for example, we have funded a prevalence 
study in a region where AIDS is endemic to help establish basic 
public health statistics and explore the potential risk posed 
by a compromised immune system on brain development. 
Simultaneously, we are working with stakeholders from that 
country, including government officials, to develop consensus 
community priorities that will inform upcoming policy and 
program discussions with federal agencies. It is worth noting 
that one of the recurring themes we have encountered working 
with health officials in low resource countries like those in 
Africa is how best to prioritize autism and developmental 
disabilities when so many life-threatening diseases or 
conditions such as AIDS, malaria, and malnutrition compete for 
public health resources.
    While we understand that perspective, we believe that such 
public health policymaking is overly simplistic. As child 
mortality decreases, simple math predicts an increase in the 
number of children with developmental disabilities. So instead 
of seeing mortality and developmental disorders like autism as 
two distinct public health challenges, they should be tackled 
as part of the same problem. Autism Speaks and our partners 
around the world believe that by addressing autism and related 
disorders now, South Africa and other developing countries can 
get ahead of the curve, help maximize outcomes for affected 
individuals and families, and minimize long-term costs to 
society.
    In conclusion, the unmet needs of the global autism 
community mirror the daily challenges that are familiar to any 
individuals or families in this country struggling with autism 
spectrum disorders. By sharing our experience, expertise, and 
translating and adapting current best practices into feasible 
and sustainable 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 
of our families here. But we need help. Our work with WHO and 
other international partners have confirmed the power of 
collaboration in accelerating progress and speedy deliver of 
answers to our families. We welcome suggestions and 
recommendations about how perhaps we can work with other U.S. 
Government agencies to further our global effort.
    Thank you.
    [The prepared statement of Mr. Shih follows:]
    
    
    

                              ----------                              

    Mr. Smith. Dr. Shih, thank you very much for your 
testimony. Again, thank you for the fine work Autism Speaks 
does not just here in the U.S. but around the world.
    I would like to now invite Arlene Cassidy, who is the
    CEO of Autism Northern Ireland, if she could provide us 
with her testimony. I would note she is speaking to us from the 
U.S. consular office in Belfast, Northern Ireland.
    Ms. Cassidy.
    Ms. Cassidy. Good evening.
    Mr. Smith. Thank you for being here.

   STATEMENT OF MS. ARLENE CASSIDY, CHIEF EXECUTIVE OFFICER, 
                           AUTISM NI

    [The following testimony was delivered via telephone.]
    Ms. Cassidy. Thank you. Please let me begin by thanking 
Chairman Smith, Ranking Member Payne, and the members of the 
subcommittee for 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 4 years to address 
the issue of inequality and 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 the troubles had in 
stunting the growth of social and economic development 
generally 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 in and 
was absorbed by families in the nonprofit sector, but 
government ownership was absent. The subsequent decade has 
witnessed the fledgling efforts of various government 
departments to plan strategically for autism alongside the 
establishment of the devolved 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 upon 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 set 
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 outdated 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 IQ score of 70 plus.
    The campaign for the Autism Act NI 2011 began in homes 
across Northern Ireland of families increasingly voicing their 
frustration about how the lack of dialogue and planning across 
government departments was seriously impacting upon their lives 
as support across the various life transitions, so 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 at 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 
decisions regarding service and benefit entitlement that are 
based upon disability legislation being open to interpretation, 
rejection, and inconsistency. This campaign united families and 
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 has 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 
invited Autism Cymru, the autism society of Wales, 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/or legislative social 
change was getting stronger. The creation of the Celtic Nations 
Autism Partnership and the 2007 delegation to Washington, DC, 
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 encapsulates the aspirations of families here. Yet it is an 
example of one mechanism that is available to many societies 
and in addressing fundamental human rights and inequalities 
when the state is resistant. And that is legislation.
    There is little doubt that the changes brought by the 
Northern Ireland Assembly regarding clarification of the 
definition of disability will reverberate across the other 
jurisdictions within the U.K. And the Republic of Ireland. As 
the Autism Act (Northern Ireland) initiates legislative change 
beyond its own jurisdiction, what a compliment to the journey 
we have traveled.
    The next steps at home are crucial. As the Northern Ireland 
executive agrees the implementation phase 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, ``Why budget for a 
condition that doesn't exist in Northern Ireland?'' And when 
there is no data, there is 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.
    [The prepared statement of Ms. Cassidy follows:]
    
    
    

                              ----------                              

    Mr. Smith. Ms. Cassidy, thank you so much. If you could 
hang on for a few moments perhaps to answer some questions. I 
want to again thank you for the work that you have done with 
the All-Party Caucus, which works so closely with our own 
caucus here. The more we collaborate, share best practices, and 
learn from your new Autism Act of Northern Ireland 2011, the 
better. We can all borrow best practices and hopefully put them 
into law and policies. So thank you so very much.
    I would like to now ask Ms. Kobenan if you would proceed.

STATEMENT OF MS. BRIGITTE KOBENAN, FOUNDER, AUTISM COMMUNITY OF 
                             AFRICA

    Ms. Kobenan. 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 Kobenan, 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.''
    A lady from Cote d'Ivoire contacted me because her sister 
was on the verge of depression. Her niece had a severe case of 
autism, but had no help. 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 ended up in a mental 
institution.
    Another concerned sister from Atlanta, Georgia, contacted 
me because her sister in Ethiopia was exhausted. Her sister 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 autism.
    A Minister of Health in an African country, which I will 
not name for privacy, once told me, ``What is autism anyway? 
Why don't you do malaria? Everybody knows malaria.'' My point 
exactly. Everybody knows malaria.
    Not to minimize these issues 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 for most 
families in 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 living 
proof. Vinny was nonverbal until the age of four. After 
receiving his diagnosis, my husband and I, as the Congressman 
said earlier, began an uphill battle. We moved to Phoenix and 
we began an uphill battle that every family with autism faces. 
It was hard, frustrating, and sometimes brutal. But we had to 
stay calm and keep going because we knew that our failure as 
parents was not an option. Vinny was lucky enough to be born in 
the United States of America, where he was able to get the 
treatment that he needs. The infrastructures are there, so we 
as his parents had no excuse to fail him.
    Today, at 11 years old, even though he is a little 
different from his peers, Vinny is self-sufficient and he is in 
mainstream school. He is doing well, according to his IEP, 
Individual Education Plan. Sometimes during our conversations 
he gives me the magic phrase, ``Mom, you just don't 
understand,'' complete with the attitude to go with it. I smile 
and give thanks to God for living in this great country. But my 
joy is bittersweet because I think about all the children and 
families with autism in Africa, and I shed a tear.
    These children in Africa are not so lucky. There are no 
infrastructures to help them. Doctors don't have the equipment 
necessary to diagnose the problem and there is no follow-up 
program. As of now, a few NGOs in countries like Nigeria, 
Cameroon, South Africa, and Ghana, are struggling to take on 
the challenge. These NGOs 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 
families to show their evil child with autism, et cetera. A 
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. Parents are afraid to show their children with autism 
because they know that there is nothing that can be done for 
them. They think that they will just expose the child for 
nothing. They do not have any hope. They do not feel protected. 
And I think that the local government, by collaborating with 
NGOs and families, will help bring them a sense of security.
    Throughout my work and experience with ACA, I had the 
opportunity to meet many families with children with autism as 
well as decision-makers in the United States and around the 
world. One of the main obstacles I observed with regards to the 
Africa 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 stakeholders 
on the local level in Africa are either misinformed or just not 
interested in the subject. Again, to think that a Minister of 
Health asked me the question, ``What is autism anyway?'' Just 
imagine the level of knowledge among the population.
    One other great challenge 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 
campaigns in Africa, as well as care.
    Thank you.
    [The prepared statement of Ms. Kobenan follows:]
    
    
    
                              ----------                              

    Mr. Smith. Thank you so very much.
    We are joined by the distinguished gentlelady from New 
York, Ms. Buerkle.
    Ms. Buerkle. 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, but even harder to 
understand, especially for those who have no personal 
acquaintance with the disease and the disorder. Autism is no 
respecter of persons. It reflects all racial, ethnic, 
religious, and socioeconomic groups. 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 am glad we will have 
additional hearings on this topic.
    Thank you, Mr. Chairman. I yield back.
    Mr. Smith. Thank you very much.
    I would like to now yield such time as he may consume to 
Mr. McCool.

  STATEMENT OF MR. TOM MCCOOL, PRESIDENT AND CEO, EDEN AUTISM 
                            SERVICES

    Mr. McCool. Congressman Smith, thank you for inviting me to 
participate in this dialogue on the global aspects of autism.
    As you mentioned, Eden Autism Services started in 
Princeton, New Jersey, 36 years ago. 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 is 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 have 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 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 service delivery component--that interaction between a 
person with autism and those teachers, family members, and 
other professionals that follow a prescribed 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's 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 and 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 inappropriate 
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 problem behaviors exhibited by children and adults 
with autism. We have developed a curriculum that contains 
hundreds of specific lessons that can be used effectively by 
teachers, families members, and direct care staff.
    Our goal is to share the knowledge and experience Eden 
Autism Services and many other direct services 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.
    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 is a social networking 
network called edWeb. EdWeb builds communities where different 
types of educators or different categories of educators are 
able to 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. An 
e-mail e-blast goes out to everyone on the network and a 
question is asked how to deal with a specific issue, and an 
immediate response is taken. EdWeb is available. It is on the 
Internet. It is something that could be very valuable beyond 
the borders of our country. So we are 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.
    [The prepared statement of Mr. McCool follows:]
    
    
    
                              ----------                              

    Mr. Smith. 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 for 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 have done.
    Let me just begin the questioning. I will start with Mr. 
Shih, if I could.
    You spoke of the Global Autism Public Health Initiative 
which you began in 2008. I know that WHO began a six-country 
pilot program in 2008 as well. I am wondering what kind of 
collaboration your organization is having with the World Health 
Organization, and if you could, what are the biggest 
challenges? We just heard from Ms. Kobenan that when she and 
others speak to health ministers--and I raise this myself every 
chance I get in Africa and elsewhere--the knowledge base is so 
rudimentary and so lacking as compared to other pandemics, 
including HIV/AIDS, malaria, tuberculosis, which need proper 
resourcing, but it seems as if you--and I think you offered a 
very clear way forward--that we need to see this as the other 
side of the coin in mitigating child mortality. As that 
improves, obviously this will exacerbate and get worse unless 
we address it.
    So if you could speak to the Global Autism Public Health 
Initiative, maybe elaborate for us on that. Also, if you might 
speak to where we are now in terms of getting to the root cause 
of what is triggering autism. I know it is always 
controversial. I will never forget in 1998 when I first 
proposed the Brick study and introduced the ASSURE Act. Some 
very well-meaning person from the Centers for 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 multi-vaccinations; thimerosal was also something people 
were concerned about and perhaps still are--but it was like, 
``Don't go there.''
    I would say for the record that I am a very strong advocate 
of vaccinations. I was the sponsor of the amendment that 
doubled the amount for the Child Survival Fund from $25-50 
million in the early 1980s. I was in El Salvador when they 
immunized upwards of 2,000 kids against polio, diphtheria, 
pertussis, and other leading killers of children. So 
vaccinations are very, very important in combating disease, and 
especially preventing it. But there should not be an acceptable 
collateral damage, if there is, particularly with multi-dosing, 
perhaps five or six at a time, where a little body cannot 
metabolize that.
    So if you can perhaps speak to that as well.
    Mr. Shih. Thank you, Mr. Chairman. First, to address your 
question about the Global Autism Public Health Initiative. We 
are an official partner with the WHO. Their mandate is a little 
broader than Autism Speaks. Their focus is on child mental 
health and disability, including autism. We saw our 
relationship as one where the AIDS community has come together 
with the international AIDS agencies and health agencies to 
address the tremendous public health challenge with HIV 
infection. 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 by the research overall globally. And we see a 
similar kind of relationship with WHO relative to autism and 
their child mental health priorities.
    So the six pilot programs that you mentioned recently 
launched, we are in discussion about where we can be most 
helpful. We are part of a discussion ongoing at the Institute 
of Medicine, the Neuroscience Board, talking about how do we 
address mental health and developmental disability needs in the 
sub-Saharan Africa. So that is still in discussion. My 
expectation is that activities with these pilot projects will 
be launched in the next 6-9 months and our expectation is to be 
at least part of some of those efforts.
    Indeed, the bigger challenge, I think, in addition to 
capacity and expertise, really is awareness. As Ms. Kobenan 
mentioned, at the country leadership level often you run into 
individual ministers and more highly-placed officials who know 
next to nothing about autism. 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 of the United Nation's General Assembly we 
organize an awareness event for the first spouses of the 
world's leaders. We bring them in, show them a little bit what 
we know about what is happening in autism worldwide, and we ask 
for their help. This year actually we are going to be working 
with WHO. So that in addition to engaging the first spouses 
from around the world, we are also able to bring in the 
Ministers of Health in these countries so that there will be a 
more immediate connection from the good will generated by the 
country leadership and the public health official of that 
country. So we are optimistic that going forward we will be 
able to bring a higher level of awareness to public health 
officials, education officials, as well as leadership from 
around the world.
    It is actually a very exciting time for autism. I think 
over the past 4 or 5 years there has been a tremendous amount 
of advancement made in terms of the understanding of the causes 
of autism. I think it also has been and remains the case that 
autism is like diabetes, cardiovascular diseases. It is a 
complex disorder that involves genetic predisposition as well 
as potentially environmental factors. In recent years, we have 
learned a lot more about the genetic architecture of autism. We 
understand where the problems are, where in the biological 
system that goes wrong that results in autism. And that has 
given us a foundation in which we can explore both development 
and interventions as well as environmental factors, 
interactions.
    So we have now started to partner with industry as well as 
other Federal agencies, including NIH, to delve more deeply 
into the causes of autism and what can we do to turn this 
knowledge into meaningful applications and solutions for 
individuals and families affected by the disorder. We are also 
working with industry as well as public agencies to take best 
practices and to disseminate them broadly because we do know 
things like behavior intervention as a result of the diagnosis 
do work and do help many individuals and families affected by 
autism. But the challenge has been to disseminate these best 
practices in every corner of this country as well as the world.
    Mr. Smith. You mentioned working with NIH. I have met with 
Dr. Shah twice, the head of U.S. Agency for International 
Development, and stressed with him the importance I think of 
USAID, with its multiple missions overseas, especially in 
Africa, to initiate an autism initiative within the department. 
I am wondering, have you had collaborations with them? Same way 
with Dr. Frieden internationally with CDC. Are they also 
looking to dedicate and prioritize autism at those two 
agencies?
    Mr. Shih. Sure. I think global health is a priority at NIH, 
and we are fortunate to be able to work with the National 
Institute of Mental Health and CHHD, Child Health and Human 
Development, for instance, in this area. CDC similarly has an 
interest, often globally, in an international research network 
that Autism Speaks developed called International Autism and 
Epidemiology Network, which was actually codeveloped with the 
CDC and right now includes over a hundred researchers from 30-
plus countries.
    I think USAID and other agencies, certainly we will welcome 
an opportunity to work with them. We have approached USAID 
previously. Understandably, at that point autism was not one of 
their priorities. But we certainly look forward to revisiting 
that opportunity and to work with the agency.
    Our sense is that from our travels and conversation with 
stakeholders around the world is that it is a highly respected 
agency and their work has had tremendous impact on the 
population around the world. And we would love to be a part of 
that.
    Mr. Smith. You were diplomatic in saying it is not among 
their priorities at USAID. Is it even on their agenda?
    Mr. Shih. I believe so, but I think it is a matter of 
prioritization; yes.
    Mr. Smith. I appreciate that.
    Finally, you mentioned South Korea, at 2.6 percent, which 
seems extremely high. Is it better prevalence studies or is 
there something that may be triggering autism among South 
Korean children?
    Mr. Shih. Right. I don't think we have a simple answer at 
the moment. I think this study has set the stage for more 
elaborate investigation looking into the possibility of 
environmental factors. But what is clear is that the Korean 
study employed a methodology that is more comprehensive than is 
being used here in the CDC. Specifically, the Korean 
investigators actually went into the general schools, the 
mainstream schools, trying to identify the children who might 
have been missed. Shockingly, stunningly, if they look at just 
the special schools, as we do here, the prevalence is about the 
same--8.9 percent. But the mainstream schools they found almost 
2 percent--almost 2 percent of kids not previously detected and 
served by the community.
    So I think the lessons here from our perspective is that we 
should think about using perhaps more robust methodology so we 
can get a more accurate reflection of what is going on in the 
United States.
    Mr. Smith. I yield to Ms. Buerkle.
    Ms. Buerkle. Thank you, Mr. Chairman. I just wanted to 
follow up on the question on methodology. It sounds like our 
method just goes into special schools, not into the general 
population of children in schools. Is there anything else that 
is different between how we conduct our research?
    Mr. Shih. I think that is the main difference. I think what 
we are encouraging people to do now is to try to do case 
finding in a more comprehensive manner, the way we have done in 
South Korea, because what I think about when I think about the 
Korean study is not necessarily the high prevalence in South 
Korea, even though that is very important; I think about the 
individuals and families who have not been officially diagnosed 
who may be struggling through schools, dealing with all the 
issues that they are dealing with, with little assistance at 
this point. I think we as a society, as a community, are in a 
position to do something about that. We have the resources, we 
have the means.
    Ms. Buerkle. Thank you.
    Mr. Smith. I will return to our distinguished gentlelady 
from New York.
    Just a few more questions.
    Ms. Kobenan, you mentioned the cultural stigma labeling 
that daughter as a bad omen. I would note parenthetically I was 
recently in Nairobi and met with some neurosurgeons who were 
working on treating Africa children with hydrocephalic 
conditions. In one case, I was told how in Uganda, children who 
develop water on the brain, which is terrible and lethal, 
unless there is an intervention, hydrocephalic condition, are 
often seen as a bad omen or something along those lines.
    I am wondering what can be done to dispel that very 
dangerous myth which leads to these children being ostracized. 
When I was in Lagos on that trip when I met with Chiti, he said 
that some of these children in Nigeria are just put aside and 
they are allowed to die because they are thought to be 
contaminated or possessed or some terrible condition rather 
than have a physical developmental disorder that with the right 
interventions could be greatly helped.
    If you could.
    Ms. Kobenan. On this issue, that is what ACA is doing. We 
are trying our level best to take on the awareness. The most 
important part is letting people know what is 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--TV, radio, and even having social 
workers going from school to school or villages to villages and 
having forum. What we call forum is they know that 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 is organizing a small group of leaders that can go to 
these places, families and villages, and talk to them and say 
it is okay to come out. You do not need to hide your child. 
Your child is not a bad omen.
    In my case, just to wrap up, the lady went to see my mom 
when I was on TV and I was talking about it. She was so touched 
she went to see my mom. She had a 19-year-old daughter that she 
has been hiding all along. And she said that because of your 
daughter I can bring her out and I am not ashamed to show my 
daughter.
    So communication is the key. TV, radio, and everything like 
that.
    Mr. Smith. Mr. McCool, you were at a World Congress Autism 
Conference in South Africa in 2006. Was that issue addressed 
particularly for the sub-Saharan African context, and could you 
just elaborate on the buy-in? Were there health ministers 
there? Was it a robust participation? Was it what you expected?
    Mr. McCool. No, it was not. Actually, it was a little 
disappointing. We did have--it was part of the World Autism 
Conference. There were people from about 53 countries 
represented. 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 home or 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 
autism was something that could be treated in a positive way. 
We actually visited a school, a nearby school, that had about 
100-150 children who were basically educated out of the home 
because of this issue.
    Mr. Smith. 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 vis-a-
vis these countries.
    Mr. McCool. Yeah, these are very specific, focused 
activities where we are contacted by someone. Often, we have 
groups that travel through the U.S. to look at model autism 
programs and will visit Eden among the programs that they look 
at.
    What we found is that they really look at behavioral 
interventions as the priority for autism. And so, applied 
behavior analysis is something that has demonstrated 
effectiveness in people, want to learn how to be trained, and 
to train direct care workers and families in how to apply 
applied behavior analysis.
    What we find is, they are so focused on the behavior that 
they fail to bring content into the equation. And so, in many 
cases, they are not teaching specific skills. And so what we 
have tried to do is to pair the curriculum with the behavioral 
training.
    And Anne Holmes, who runs Eden outreach services, through 
technology now 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 Princeton, New Jersey, really provide that kind of 
support to anyone anywhere in the world.
    The only other obstacle we have is language. You know, our 
curriculum is in English. We have made several attempts to have 
it translated into other languages. Right now it is in the 
process of being translated into Hebrew. But all of the people 
we have worked with thus far have been able to navigate with 
English.
    Mr. Smith. Ms. Cassidy, you mentioned the 500 percent 
increase in diagnosed autism cases in Northern Ireland since 
2002. Can you tell us to what you attribute this increase?
    And, secondly, you note the 2011 Autism Act for Northern 
Ireland is among the most progressive and, I think, enlightened 
pieces of legislation anywhere in the world. Are there 
recommendations that you might have for us on how we could 
improve our efforts? And, of course, that might be replicated 
elsewhere.
    And, finally, you also point out that the troubles in 
Northern Ireland--and I would note parenthetically that we 
actually had 11 hearings in this subcommittee on the troubles 
in Northern Ireland, so we are very well-acquainted with what 
turmoil you have been through--but we hear it all over the 
world, especially in some of the places in Africa, Cote 
d'Ivoire is obviously going through its own problems right now, 
and we are told that the autism resource organization in Cote 
d'Ivoire has shut down during the crisis. So, again, kids are 
put on hold while political problems deteriorate into violence.
    So if you could speak to some of those setbacks. And, you 
know, there needs to be almost like a separate focus on, what 
do we do in conflict areas. You know, there needs to be some 
awareness that the needs, and special needs at that, of an 
autistic child do not go away with political turmoil.
    Ms. Cassidy. Thank you.
    Well, starting with the 500 percent increase, I think 
that--yeah, all the queries just tie in together--I think that 
reflected a catch-up. You know, no data collection had taken 
place, and then all of a sudden one of our Government 
departments decided to do some data collection with school-age 
children, so there was a captive audience in the local school 
population. And then, a number of years later, they kept on 
that data collection. So that is 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, so they knew 
there was a tip of the iceberg going on here. But I think I 
would attribute it to just really the way it has happened 
worldwide. It is exactly the same issues as you are picking up 
on. It is about increasing awareness, increasing expertise in 
identifying and diagnosing the condition.
    You know, I do believe that there are a lot of questions to 
be asked about environmental factors. So we are just in the mix 
with everyone. I don't think there was anything particular to 
Northern Ireland except for the fact that there was, until 
2002, no baseline information gathered. Then there was the 
baseline information that 900 children were identified in 
Northern Ireland, school-age children, with autism. And then, a 
number of years later, when the same exercise was carried out, 
the figure they come up with was 4,000 children, almost 5,000 
children.
    So, data collection, you know, has been a huge issue in 
Northern Ireland. Various services are starting to collect some 
data, but the data is non-transferrable. The information is 
usually particular to that service, to child health or to 
education, and the departments haven't been exchanging the 
information. And that is one of the really, you know, good 
things about the legislation that has 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 that we have addressed a core 
difficulty, and that is the whole inequality issue. It was one 
of those, you know, ``eureka'' moments that we had when we 
looked at our own disability legislation and realized that it 
was out of date. I know that in England they updated their 
disability legislation and created the English Equality Act, 
but some of the other devolved jurisdictions within the U.K. 
did not.
    And, in Northern Ireland, I think we looked at it, you 
know, initially, probably first, discovered that the 
legislation was out of date, that it didn't make allowances 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 is really exciting about the new 
legislation, as well.
    So, in short, the new legislation, for us it really 
recognizes autism for the first time within disability 
discrimination legislation and protects citizens with autism 
and gives them a voice and gives them a possession.
    The other thing that came up with the legislation was the 
need for a cross-departmental approach to autism, a government 
approach to autism. And with our particular--we have, as you 
know, particular challenges with the mandated coalition system 
in the Northern Ireland Assembly, where various government 
ministers are in place from various specific political parties. 
And their policies may or may not agree, so 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 is another first, if I am correct, that is 
another first for this legislation.
    As I say, 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 throughout the 
world is knowledge. Ignorance is the greatest enemy; arrogance, 
too.
    And, you know, I think with the situation in Northern 
Ireland, I think it comes back to your third point, the 
particular--in conflict situations, I think parents are 
paramount. This legislation would never have come about in 
Northern Ireland if it hadn't been for the nonprofit sector 
working with parents on the issue of parent empowerment, to 
make their voices known. Because they were basically 
disenfranchised citizens, and they now have 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, 
you know, given the troubles that we have had in Northern 
Ireland, it was fantastic to see the final debate when the bill 
became law. 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 
autism society in part of Africa, you know, having to disband 
at a time of extreme conflict. That actually happened in 
Northern Ireland, because in the 1970s there was an autism 
charity and they fractured, as well. And it wasn't until 20 
years later, 1990, that the charity that I worked for was 
formed by parents again. And that time, the timing was right. 
And, you know, that was 1990, and, you know, people's minds 
were turning to, ``Can this go on forever?'' and looking maybe 
toward, you know, the ceasefires, which came a few years later.
    But, certainly, in the legislation in Northern Ireland, the 
parents and the links they had with local politicians--they 
brought local politicians to family days and events so that the 
politicians could see what it was and what they were coping 
with and the home situation, some very challenging children and 
adults. And gradually over--this took 10 years, I think, this 
legislation. A lot happened in the last 4 years, but we have 
been working on this with local parents and politicians for the 
last 10 years.
    I hope that helps in addressing----
    Mr. Smith. Ms. Cassidy, thank you very much.
    And I remind my colleagues and our audience that Ms. 
Cassidy is actually in our consular general's office in 
Belfast, Northern Ireland. And we are most appreciative of her 
leadership but also of her time in joining us today.
    Congresswoman Buerkle?
    Ms. Buerkle. Thank you, Mr. Chairman.
    Dr. Shih, I would like to go back to your previous 
testimony with regards to the research that CDC is doing. And 
you mentioned that we should be more comprehensive. So we 
talked about what venues we go into and what we--can you just 
expand on that? In a perfect world, what would you consider 
comprehensive research?
    Mr. Shih. 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 are not missing any children that, because 
of perhaps their milder 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.
    Ms. Buerkle. Thank you.
    And then in a previous statement, as well, you mentioned 
USAID and that you did feel this was a priority and that they 
had other priorities. As we see the incidence of child 
mortality decreasing, obviously, it would seem like we are 
going to begin to see an increase in disabilities. Do those two 
pieces have to be separate from each other? Can we address 
mortality and then look at disabilities, including autism, 
jointly?
    Mr. Shih. Yes, I think that would be an ideal situation. I 
mean, I think our perspective is that they are not distinct 
issues; they are interrelated. And we have heard from some of 
our advocate friends is that they would like to have 
survivalist ability without disability, and that is their 
ultimate aim.
    I think that makes a lot of sense, you know. It is not just 
about being able to survive a terrible disorder and diseases as 
a child, but being able to go on and realize your full 
potential as an individual. And that is much more difficult, 
obviously, when you have to deal with disabilities.
    So I think we can get ahead of the curve and think about 
and highlight public health policies that not only address the 
mortality issue but plan for the future. What are we going to 
do with children that are going to emerge with disability as 
time goes on? I think it would really help us in terms of 
thinking not only in the context of public health but also 
development in general for the country and our ability to 
address, you know, global public health issues, such as autism 
and other noncommunicable diseases.
    Ms. Buerkle. Thank you, Dr. Shih.
    Ms. Kobenan, you mentioned in your testimony about Voice of 
America and being able to go onto that radio and talk about 
autism. Have you been back with Voice of America speaking?
    And, beyond that, how have you found the media? Have they 
been a good partner in getting the word out? You mentioned 
communications earlier, how important that is. 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?
    Ms. Kobenan. Voice of America have become a friend. They 
invited me--as a matter of fact, last April I was there, April 
2nd, World Autism Awareness Day, I was there. And they have 
been very helpful in passing the information around, because 
the audience, the target audience, is in Africa. So I get a lot 
of feedback from people from Africa seeing me on Voice of 
America. Yes, I have been back on Voice of America, and I hope 
that in the future they will keep inviting me and we can have a 
close partnership.
    As far as Cote d'Ivoire, for example, where I have been on 
TV, they are so--I am going to use the word ``ignorant'' about 
the subject, that they don't even know how to handle it. And I 
think that when you address these type of issues, when it comes 
to health, it is 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 the journalist or whoever 
is inviting you knows that you are working with 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, there are so many small organizations 
talking about so many things, that sometimes they don't give 
you enough time, and the communication part is not very strong.
    So I think that, by talking to the stakeholder and the 
responsible parties, that we will have enough time and a 
platform with the TV and the radio, and they will be more, you 
know, acceptable to receive us.
    Ms. Buerkle. Thank you.
    And as a--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?
    Ms. Kobenan. It has been very hard, and we tried it all. We 
tried supplemental vitamins and everything. But what has worked 
with us, which is a little bit controversial, is homeopathy.
    Each child has his own situation, and whatever works with 
one child might not work with the other. In the case of Vinny, 
it was so hard that sometimes we were putting him down, 
wrestling our child to take his medication. And I was crying 
all the time, and I said, ``There has to be a better way.'' The 
doctor said, ``Put it in applesauce.'' After a while, 
applesauce tastes like medication, and the child knows it and 
he doesn't want to take it. So, eventually, we came across the 
homeopathy lady who really helped him, and that worked for us.
    As a matter of fact, this lady is working with some 
children in Africa. What we did is we found a way to bring 
these children with her, and she deals with them through CD, 
she watches the children through a CD, videotape, and then she 
has a questionnaire. There is a way for her to work with these 
children, because it is cheaper and it is more affordable. 
Well, in Africa, everything cheap is good, right? So that is 
what she is doing right now.
    We started with a couple of children, just to see how it 
goes, among other treatment that we are doing. We have our 
challenges, like, for example, the war, so we had to take a 
break and things like that. But it is working, and eventually 
the parents said that the children are more calm, quiet.
    So homeopathic is one way, and then, of course, you have 
your treatment and regular pediatrician medication and 
everything that we have over there. We have a pharmacy in Cote 
d'Ivoire, for example, where they can get their medication to 
help them cope with it, yes.
    Ms. Buerkle. Thank you.
    Mr. McCool, in your testimony, you talked about the edWeb 
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?
    Mr. McCool. EdWeb itself is more comprehensive. It has 
communities for different segments. Eden established the autism 
community as part of edWeb. And so the people I was referring 
to, I think we have about 1,200 teachers who have signed up, 
public and private school teachers around the country, who 
network with each other, dealing with specific autism-related 
educational issues.
    Ms. Buerkle. Are you aware of any other programs similar to 
this, similar to edWeb?
    Mr. McCool. No. I think Facebook and Twitter and all those 
have been used by various people around the country, but we 
have found that this is so focused 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 LinkedIn.
    This is very specific. There was a community of librarians, 
for example, who really deal with school library issues. There 
is a community for special education administrators. So you are 
communicating on very specific, meaningful topics. And it is 
one-to-one once you sign up.
    Ms. Buerkle. Thank you very much.
    I yield back, Mr. Chairman. Thank you.
    Mr. Smith. Thank you very much.
    Mr. Marino?
    Mr. Marino. Thank you, Chairman Smith. First of all, I 
apologize for being late. Some constituents kept me a little 
longer than I anticipated. But thank you for calling this 
hearing, because it is critical.
    I have two children with special needs, and I am going to 
just pose a little scenario to the panel and ask if each one of 
you could respond to my question. We will start with Mr. 
McCool.
    My son has been--it has been suggested by a couple of 
physicians that he has a very mild form of autism, Asperger. 
But then there have been other physicians that say, no, they 
are off the mark.
    How well-defined are we and how in tune are we with 
diagnosis today of autism, and particularly the breakdown 
elements of autism? Do you understand my questions?
    Mr. McCool. Yes.
    Mr. Marino. Please.
    Mr. McCool. Well, autism is one of those diagnoses, that 
there is no medical test, no blood test for, so it is done by 
observation and by sort of looking at the different categories. 
Obviously, autism impacts that part of the brain that impacts 
speech and other communication behavior, those kind of things. 
It doesn't impact IQ. So I think, obviously, the expansion of 
the definition to include Asperger's has impacted the numbers.
    I think what we see is, if someone is diagnosed or 
suspected of having Asperger's, the thing to do is to really 
look at their communication and find out, you know, is their 
communication system intact, is it appropriate? That seems to 
be the most singular indicator. Because children, especially 
young children, 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 that they are going to have it.
    So I guess the big question is, if someone is suspected of 
having Asperger's at an early age, would you treat them any 
differently now, suspecting that, or not saying that they 
actually have autism? And so we basically say, let's treat the 
person normally, let's see what happens. Generally, when we get 
to the point where it starts impacting their behavior or 
socialization skills, then that is a bigger indicator than just 
language development.
    Mr. Marino. Please.
    Ms. Kobenan. I think there is a lot more that needs to be 
done as far as diagnosis is concerned. The experience that I 
had with my child, up to 4 years old he wasn't speaking, and 
his pediatrician kept telling me it is because I speak French, 
not to worry. And this is here in America, not to say anything 
bad with that. But he lives here, and up to 4 years old he 
couldn't tell me.
    And the test that I had, he 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 gave the cold medication 
to his cousin and spent 45 minutes on my son and diagnosed him 
and faxed me the prognosis.
    So I want to say there is a lot more that needs to be done. 
Even though in the United States we are so far ahead, compared 
to, you know, Africa, but there is a whole lot that needs to be 
done. In my case, they had do a brain map to know exactly what 
Vinny's problem is. And when we did the brain map, the doctor 
told me that he was smart, he has a high IQ, that I shouldn't 
worry about the intelligence part but worry about the society 
part, how to help him live in society with everybody. So, spend 
your effort on that department, and that is what we did. 
Because if you don't know that, you are all over the place 
trying to help him, when it is expensive, you waste money to 
treat him on the wrong direction. So that kind of helped us, 
the brain map helped us a lot to find out exactly where to put 
our effort.
    So, as far as diagnosis is concerned, I think, you know, 
the United States, I am very grateful for what we have, but of 
course in Africa there is nothing.
    Mr. Marino. Doctor?
    Mr. Shih. So, as Mr. McCool mentioned, you know, autism is 
diagnosed largely behaviorally these days. And there is a 
tremendous amount of heterogeneity among the population. I 
think a well-regarded researcher from the Albert Einstein 
School of Medicine, Dr. Isabelle Rapin, said that when you have 
met one child with autism, you have met one child with autism. 
So it is very difficult to generalize beyond the social 
communication deficits.
    Having said that, there are these diagnostic instruments, 
psychological instruments, that have been used and been 
standardized. And so the ability to discriminate an individual 
on the spectrum from an individuals who are not is fairly 
robust at this point.
    I think the question you asked about Asperger's and all 
these subcategories of autism, I think historically we have 
used them to differentiate people who are perhaps verbal or 
nonverbal, who have intellectual 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 edition of DSM-5, which is 
the bible for psychiatric diagnoses, they are going to do away 
with all these subcategories; there is just going to be one 
autism spectrum disorder. So all the things that we previously 
talked about--high-functioning, low-functioning, Asperger's, 
and so on--will be actually part of one broad spectrum disorder 
diagnosis.
    And this is consistent with the evidence we have so far. 
You know, we certainly have individual--we are now appreciating 
that individuals who are nonverbal actually have very rich 
inner life, very robust intelligence; they just don't have the 
faculty to be able to express themselves well. Whereas there 
are people who have, you know, average or above-average verbal 
faculties but have a tremendous amount of issues, you know, 
intellectual disabilities as well as social interactions.
    And, certainly, these categories, these labels that you put 
on these children doesn't always predict in terms of the 
outcome. And there are many individuals who seem to be very 
challenged in early parts of life who actually went on to have 
very productive lives, whereas others who didn't seem to make 
as much improvement.
    So I think, as we learn more about autism, I think the more 
we appreciate really it is a very broad spectrum of disorders. 
So, often, what we say now instead of autism as one disorder, 
you talk about ``autisms.'' Just like the way we talk about 
cancer, even though it is a big collection of disorders but 
there are individual types of cancer that require different 
types of treatment approaches.
    Mr. Marino. Thank you.
    I yield my time.
    Mr. Smith. Mr. Marino, thank you.
    Let me just ask a couple of final questions.
    Mr. McCool, in your testimony, you talked about teaching 
students with autism, effective strategies for grades K through 
5 and effective strategies for 6 through 12. And I am 
wondering, you know, one of the things that we have all come to 
a better understanding of is that, unlike other disabilities--
mental, emotional, whatever it be--that autism is in a league 
of its own. It is a category. It is a type of teaching where, 
unless the teachers are very specifically trained, it is very 
difficult to meet the challenges.
    And I am wondering, you know, in her testimony, Ms. Kobenan 
said that there are three primary problems: Lack of awareness, 
lack of education, and lack of availability of proper 
treatments. In the United States, where we have been grappling 
with this for several years, we have still not trained the 
teachers in a way that is commensurate with the problem and the 
challenge that we face.
    And I am wondering if the teaching you espouse can 
increasingly be exported to Africa and exported either via the 
Web or training seminars or bringing people to Princeton, to 
Eden Institute or similar institutions, so that there can be a 
teach-the-teachers initiative to meet this challenge.
    Mr. McCool. Absolutely. And that certainly is the model 
that we are advocating. With webinars, the great thing about 
webinars is that they can be live so they can be interactive. 
They can be rebroadcast later so that 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 a specific autism certification track. California has 
passed legislation that has defined specific certification in 
autism that requires both instruction and coursework and a 
practicum, so that a person can get a level 1 or level 2 
certificate as an autism teacher. And that process has begun. A 
lot of those courses are available online so that people can 
get them.
    The motivation for this is, obviously, to be a better 
teacher, but also there are incentives built in to pay 
increases for people who achieve higher levels of 
certification. I am not aware of any other states right now 
that have that same process in place. We are working with 
Neumann University in Pennsylvania, who is looking to establish 
a similar process in Pennsylvania even though there is no state 
law that defines it, but building on what California has done, 
looking at the same coursework, 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 majority of 
people believe that if you get the BCBA certification that you 
have skills, you have acquired skills that make you proficient 
in dealing and teaching children and adults with autism. And, 
again, it is very rigorous. You have to take coursework, and 
have to do about 1,500 hours in a year of practicum under the 
supervision of another BCBA.
    And so we use that model. We have BCBAs at Eden. 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 is 
emerging. More and more colleges and universities recognize the 
need for it. And there are, you know, several proposals out 
there. Kean University in New Jersey has just established one, 
as well.
    So I think it is not a normal--it is so behaviorally 
intensive that regular college coursework doesn't really equip 
people to be effective ABA therapists.
    Mr. Smith. Thank you.
    Mr. Shih?
    Mr. Shih. I would like to just add to that.
    I think that has been one of the major challenges, is to 
train our professionals to really meet the needs. And I think, 
in less optimistic moments, you wonder if you will ever train 
enough people to might all the needs out there.
    Fortunately, I think in recent years there has been 
research done now where people have now started to train 
nonspecialists as co-therapists in taking care of their 
children, and that includes parents. And there has actually 
been, over the past couple of years, several really well-
designed studies that have been published that demonstrate that 
nonspecialists, as well as parents, when working with an 
expert, can actually faithfully deliver intervention at home 
for their children.
    And we see this as a possibility, in terms of our 
international development, because, number one, it empowers the 
parents, because every parent knows their child the best and 
knows their needs need. And you are giving them the toolset to 
better manage behavior, to help them learn in the way that they 
need to learn.
    And the second thing is that you can even do this kind of 
training via the Internet, this learning technology. Again, 
there have been recent publications that have demonstrated that 
there is practically no difference when you train professionals 
via the Internet versus an in-person setting. You get the same 
kind of expertise coming out of your class in providing 
services for the families.
    So there is reason for hope.
    Mr. Smith. Thank you.
    Again, Dr. Shih, you had mentioned in your testimony, and 
it is worth quoting again: ``The current scientific consensus 
is that 67 million people, or about 1 percent of the world's 
population, is affected with some form of ASD, a prevalence 
that is higher than AIDS, diabetes, and cancer combined.''
    In his testimony that was submitted for the record from 
WHO, Dr. Shekhar Saxena, director of the Department of Mental 
Health and Substance Abuse of the World Health Organization, in 
his--this will be part of the record--it says that tens of 
millions of people are estimated to be affected in Africa only.
    And I am wondering, you talked about the numbers in South 
Korea being higher. It seems, when we study it, it is like a 
tip-of-the-iceberg phenomenon, where it is worse than we 
thought.
    And I am wondering, again--and I asked this earlier, but I 
ask it with emphasis now, because I have raised it with Dr. 
Shah 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 usually reserved, by definition, for infectious 
diseases, but I think, you know, with quotes around it, we can 
say this is a pandemic that is going largely unrecognized. And 
it is about time; our hope is with this hearing, to begin with 
vigor and a fresh set of impetus and eyes to make this a global 
effort with our tax dollar, which heretofore has not been the 
case internationally. Domestically, I think we are making 
progress.
    I would note parenthetically that in the late 1990s, when I 
introduced the ASSURE Act, CDC was spending $287,000 per year 
for 5 successive years, straight line. That doesn't buy a desk. 
That doesn't buy anything of value. And then they got into it, 
obviously, as a result of the legislation. We are now spending 
$22.1 million. In regards to NIH, we were spending $10.5 
million. Now we are spending, in 2010, $160 million. So, you 
know, when we chronicle, when we 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 recently 
called ``Dancing with Max'' by Emily Colson. I invited her up. 
She talked to the members of our Autism Caucus. Mr. McCool, you 
might want to speak to this, as well.
    Obviously, we are still focused on early intervention and 
what do we do about all these young people, how do we help them 
have a more productive life and to help the suffering, frankly, 
of so many of these heroic parents who are faced with, 
particularly with severely autistic children, a very, very 
challenging life.
    And I am wondering, with the aging-out issue, in ``Dancing 
with Max,'' Emily Colson 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 from people around her, she got through it. And now Max 
is approaching adulthood, and the important regimentation that 
goes along with formal schooling will go away.
    And she made an appeal to Congress, and I know Autism 
Speaks has been making this appeal very robustly--Autism 
Society, Mr. McCool, which you are a part of, is making that, 
as well--what do we do now with these young adults to ensure 
that their lives and the quality of life does not diminish?
    And I am wondering if you could speak to that, because it 
obviously has international implications, as well as domestic 
ones, for those children. Does anybody want to touch on that? 
    Mr. Shih. Sure. So one thing I have learned from talking to 
all the stakeholders around the world is that the concerns of 
the parents, what they want for their children, is all the 
same. They want the best possible life for them, and so on. 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 could 
benefit from awareness and research and delivery is really not 
a very ambitious goal. I think it is actually within the reach 
of most societies. I think, as I think it has been talked about 
in this particular committee meeting, you know, I think it 
takes political will. It takes understanding and knowledge and 
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. So, oftentimes, a quality-of-life issue can 
be robustly addressed with the right investment, strategic 
investment, of resources and expert assistance.
    So I think it is really important for this committee to 
help the global autism community to think about, what are the 
possible solutions, what can we do? We are not looking for 
charity per se. We are looking for empowerment and the ability 
to help them to help themselves.
    Ms. Kobenan. I just want to say something about the 
training, you know, tied up with this. What I want to say is, I 
hear these numbers that you are talking about, millions and 
millions, and I just go, ``Oh, my.'' In Africa, it doesn't take 
much to do a lot. Just an example, in 2009 I sent--I mean, ACA 
sent $1,000 to Autism Cote d'Ivoire. With that $1,000, they 
were able to have two volunteers, French ABA professionals, 
that gave their time. They weren't paid for what they were 
doing, but we were able to put them in a hotel and buy them--
you know, little things like that. And within a week, they 
trained a few teachers and a few caregivers.
    Now, this is not a lot, but it is a small step, and it adds 
up. You know, little by little, every so often, 6 months or a 
year, you can have a good team of people, you know, with some 
tools and help. It is always hard when you want to have 
something on the bigger level and, you know, come with all 
these big grants. But we can start small, create these centers, 
you know, small centers. They don't need to be very 
sophisticated, but where they can go and get the information 
and where the communication can come from.
    I just wanted to add that.
    Mr. McCool. I think we have to remember that, until 1975, 
children with disabilities weren't entitled to a free 
appropriate public education. And so, a lot of the strides that 
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 adults with disabilities, particularly adults with 
autism, that same level of support is not available. In fact, 
many times, the huge investment that has been made with 
behavorial therapies, speech therapy, occupational therapy 
disappears, the effectiveness of that disappears if 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 being 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 a segregated program putting people on 
the farm. What I see today is a growing number of farm 
programs. And, obviously, it is the model in Ireland, which has 
an agricultural culture. But even in our country, small farms 
are coming back, and they are employing people with autism, who 
enjoy that kind of work. It is very repetitive. It is the kind 
of work that aligns skills of 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 is 
a population constantly leaving childhood and entering 
childhood, but the adult program--adults with autism are living 
normal lifespans.
    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 are looking at you 
know, what is that next step? What kind of support can we 
provide them?
    So I think the model that we had with the Education for All 
Handicapped Children Act of 1975 really set an example of what 
can be done to help adults with disabilities, 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.
    Mr. Smith. The chair recognizes Mr. Payne, the ranking 
member of the subcommittee.
    Mr. Payne. Thank you very much. And thank you for 
prolonging the hearing so I could at least get here in time. I 
think he thought he was in the Senate, filibustering. But I 
appreciate that, having the opportunity to be here. I had a 
longstanding engagement which I was unable to alter.
    But let me take the indulgence of the committee for a brief 
opening statement. It might be past tense now since you have 
testified, but we looked at your testimony and I am aware of 
what each of you had to say.
    But I certainly begin 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 have given and that my staff 
heard and that we looked at earlier on autism globally and how 
proposed interventions would coexist and complement our efforts 
to combat Africa's leading killer diseases, namely HIV/AIDS, 
malaria, and neglected tropical diseases, where they have the 
emphasis, as has already been mentioned by the chairman, but 
issues like this, which impact on so many others, are left 
unattended to.
    Autism, often identified by impairments in communication 
and social interaction, is usually recognized in early 
childhood, around the age of 3. Imagine the news that one's 
child, and 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 in 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, 
Mrs.--say it?
    Ms. Kobenan. Kobenan.
    Mr. Payne. Kobenan. I never would have said it so nicely.
    But as you have testified and as I read in your remarks 
about how you had to leave this region of the country, where 
you would think that in Washington, DC, and in this environment 
of Maryland and Virginia we would have the most appropriate 
attention, given the resources, but you chose to move to 
Arizona because you knew that, there, there 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 even in general, 
tends to be on the back burner, rather than diseases that we 
hear so much about.
    In the U.S., there are public and private resources 
available for impacted families to better cope with the 
disease. Sadly, the same support structures provided in the 
developing world often do not exist in low- and middle-income 
countries, due to inadequate funding and a lack of 
understanding or diagnosis of the disorder. There are often 
neglected populations battling a wide range of physical, 
mental, and neurological disabilities in developing countries, 
further compounding the burden of poverty and weak health 
systems on families, communities, and governments.
    The United Nations has taken some important steps to ensure 
equal rights for those with disabilities, including the 1981 
declaration by the United Nations for the International Year of 
Disabled Persons. Then it established the United Nations Decade 
for Disabled Persons in 1983 to 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 for 
people with disabilities through several fora, particularly the 
Convention on the Rights of Persons with Disabilities in 2006, 
and declared April 2nd World Autism Awareness Day.
    And so many times there is--and, actually, UNESCO has 
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 for 
education for every category of disabled persons as an integral 
part of the educational system. This concept of equal education 
for mentally and physically disabled people has been endorsed 
by several countries through the ratification of numerous 
international and regional 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 low- and middle-income countries, would not raise the issue 
of the 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--that 
is here in the United States--with the disease. Sadly, though, 
the same support structure provided in the developed world 
often does not exist in low- and middle-income countries due to 
inadequate funding and a lack of understanding or diagnosis of 
the disorder.
    There is an often neglected population battling a wide 
range of physical, mental, and neurological disabilities in 
developing countries, further compounding the burden of poverty 
and weak health systems on families, communities, and 
governments. The United Nations has taken these important 
steps, as I mentioned before.
    However, the right to education remains unattained for many 
autistic children in the developing world. While the United 
Nations' actions are commendable, many developing countries are 
failing to address the special needs of their autistic 
population. The World Health Organization found that, in 
middle- and low-income countries, there is only one child 
psychiatrist for every 4 million people. That is unbelievable.
    I look forward to what you have said and has been recorded, 
looking at low-cost interventions, given their limited state 
budgets and over burdened 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 several--the Journal of the 
International Association of Special Education found that 
children with autism in Africa do not share the same behavioral 
signs as their Western counterparts--it was very interesting--
such as rocking back and forth. It seems that geographic and 
environmental differences impact the way that the disorder 
manifests itself, which makes it even more difficult because 
there is not going to be one kind of a treatment that covers 
all. And I look forward to how we might be able to work along 
with the fact that there are different signs.
    Furthermore, we know that, from the Haiti earthquake and 
other examples, that in crisis situation those with 
disabilities are often inadequately cared for. We know that 
this 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 for 
your interest. And I just have a quick question or two, since I 
have almost exhausted my 5 minutes. I don't know how to tell 
time.
    But 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, particularly in Africa? And what are 
the greatest challenges in conducting autism prevalence studies 
abroad?
    If any of you would like to try to take a stab at that.
    Mr. Shih. Sure.
    So, the challenges of conducting prevalence studies in 
Africa is actually similar to elsewhere. It is about informing 
the community, informing the stakeholders, so they understand 
what you are trying to do and to work with you. And we found 
that when you have community buy-in, you are actually able to 
generate the highest-quality data.
    And the greater challenge, I think, for working with 
territory in Africa is actually the second act. To do a study 
in a community is one thing, but trying to figure out what you 
are going to do with all the individuals and families who are 
affected by autism that you identified through the study is 
something completely different. And that requires a commitment 
not only to the individuals 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 is that you want to nurture and support and grow things 
that are already working for individuals and families on the 
ground. So, going to any low and developing country, you need 
to really approach it from a top-down as well as a bottom-up 
perspective. You need the top-down so that the solution you 
develop from the bottom-up is sustainable and can be integrated 
as a meaningful solution for the national public health system 
in the longer term.
    Ms. Kobenan. I said it a minute ago, and I will say it 
again. One of the basic, basic challenges that we have are the 
lack of centers. You know, you can have a program to teach 
teachers, to educate stakeholders, and all that, but once the 
whole team is gone, whether you come from the United States, 
you teach these people, and then you leave, where do the 
parents go for more information? They need to have a center. 
Everybody has a house. They need to have a house that they call 
``autism center.'' It doesn't have to be sophisticated. But 
that is a major challenge.
    Once they have those little centers, they can go there, get 
information. And if anybody has any question, they can go 
there. They can have a small staff member that can go part-time 
with no benefits and just work there to educate people, and 
they have a place to go. That is the first step.
    Mr. Payne. Would you think that the church community in 
Africa or other developing countries could be a center, if 
there could be an educational campaign to educate the religious 
community and simply ask if their parsonage or some part of 
their building could be used for that?
    Ms. Kobenan. Yeah, that is a good point, because, indeed, 
that could be a solution. And when I say ``center,'' it doesn't 
have to be a building; it can be those things, too.
    Because, for example, the ex-wife of the Ambassador of 
Liberia--because at ACA we try to work with the wives of 
ambassadors and get them to be involved, and she got involved. 
Her solution was to talk to one of her church pastors and see 
if he could give her part of a building. And, indeed, within a 
year, she was able to do that. And she told me that the center 
actually was created.
    So that is a very good suggestion, too.
    Mr. Payne. And we might even go further and ask our U.S. 
Department of State and USAID, as they move forward on this, 
that we might prod them on this issue and suggest to them that 
their ambassadors--and they all have projects that they can 
fund a little stipend that they could do, and they don't even 
need that. But if the ambassadors' wives could have the women, 
perhaps, of the countries and encourage them to have a meeting 
and then encourage the African community to therefore approach 
the hierarchy of the church, I think that we could--as you 
mention, you don't need a lot of money, you just need to use 
the resources. And everyone needs a home, you are absolutely 
right.
    Because I was late and I have taken enough time, I will 
yield back and will ask no other questions. Thank you very 
much.
    Mr. Smith. I understand Ms. Buerkle has an additional 
question.
    Ms. Buerkle. Thank you, Mr. Chairman. Just as a brief 
follow-up, Ms. Kobenan, you mentioned regarding your son and 
the brain mapping that was done. It seemed to really shed light 
on what he was going to have difficulties with. Can you expand 
upon that? Is that an MRI of sorts?
    Ms. Kobenan. It is an EKG that you do. They put a lot of 
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 for a 
period of time. It is very expensive. We had it in Arizona. But 
it is so helpful. So I wouldn't suggest that for every family 
if they have to come up with the money out of their own pocket 
because ours cost us $3,500. 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 he can take care of himself when he grows 
up. So you can start investing money to find a good facility 
for him or you can invest your money into developing activities 
for him to help himself. So that kind of gives you a roadmap 
right from the start. We were lucky enough to have come across 
this doctor that did that.
    Ms. Buerkle. Does anyone have anything to add to that?
    Is it not covered by insurance, does anyone know?
    Ms. Kobenan. Not at all, trust me.
    Ms. Buerkle. Is it an EEG?
    Ms. Kobenan. EKG.
    Mr. Shih. I think it is the EEG.
    Ms. Buerkle. So it is what they do somewhere for seizures 
and other types of brain function?
    Ms. Kobenan. Right.
    Ms. Buerkle. Thank you very much. I yield back, Mr. 
Chairman.
    Mr. Smith. Would the witnesses like to add anything 
further? Ms. Cassidy, thank you for your testimony from 
Belfast, Northern Ireland.
    I would just like to close with the statement that Dr. Shih 
made and I think it again encapsulizes why we are so concerned. 
He noted in his testimony: As child mortality decreases, simple 
math predicts an increase in the number of children with 
developmental disabilities. So instead of seeing mortality and 
developmental disorders like autism as two distinct public 
health challenges, they should be tackled as parts of the same 
problem.
    To continue his statement, he said, you said just a few 
moments ago, Autism Speaks and our partners around the world 
believe that by addressing autism and related disorders now, 
South Africa and other developing countries can get ahead of 
the curve, help maximize outcomes for affected 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 country specific level 
to mitigate this devastating developmental disorder.
    I thank you.
    The hearing is adjourned.
    [Whereupon, at 4:05 p.m., the subcommittee was adjourned.]
                                     

                                     

                            A P P E N D I X

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     Material Submitted for the Hearing RecordNotice deg.




   Material submitted for the record by the Honorable Christopher H. 
 Smith, a Representative in Congress from the State of New Jersey, and 
   chairman, Subcommittee on Africa, Global Health, and Human Rights



                                 
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