[House Hearing, 112 Congress]
[From the U.S. Government Publishing Office]
GLOBAL PERSPECTIVES ON AUTISM--A GROWING PUBLIC HEALTH CRISIS
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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/
______
U.S. GOVERNMENT PRINTING OFFICE
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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
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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
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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
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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