[House Hearing, 113 Congress]
[From the U.S. Government Publishing Office]
THE GLOBAL CHALLENGE OF AUTISM
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HEARING
BEFORE THE
SUBCOMMITTEE ON AFRICA, GLOBAL HEALTH,
GLOBAL HUMAN RIGHTS, AND
INTERNATIONAL ORGANIZATIONS
OF THE
COMMITTEE ON FOREIGN AFFAIRS
HOUSE OF REPRESENTATIVES
ONE HUNDRED THIRTEENTH CONGRESS
SECOND SESSION
__________
JULY 24, 2014
__________
Serial No. 113-205
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Printed for the use of the Committee on Foreign Affairs
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COMMITTEE ON FOREIGN AFFAIRS
EDWARD R. ROYCE, California, Chairman
CHRISTOPHER H. SMITH, New Jersey ELIOT L. ENGEL, New York
ILEANA ROS-LEHTINEN, Florida ENI F.H. FALEOMAVAEGA, American
DANA ROHRABACHER, California Samoa
STEVE CHABOT, Ohio BRAD SHERMAN, California
JOE WILSON, South Carolina GREGORY W. MEEKS, New York
MICHAEL T. McCAUL, Texas ALBIO SIRES, New Jersey
TED POE, Texas GERALD E. CONNOLLY, Virginia
MATT SALMON, Arizona THEODORE E. DEUTCH, Florida
TOM MARINO, Pennsylvania BRIAN HIGGINS, New York
JEFF DUNCAN, South Carolina KAREN BASS, California
ADAM KINZINGER, Illinois WILLIAM KEATING, Massachusetts
MO BROOKS, Alabama DAVID CICILLINE, Rhode Island
TOM COTTON, Arkansas ALAN GRAYSON, Florida
PAUL COOK, California JUAN VARGAS, California
GEORGE HOLDING, North Carolina BRADLEY S. SCHNEIDER, Illinois
RANDY K. WEBER SR., Texas JOSEPH P. KENNEDY III,
SCOTT PERRY, Pennsylvania Massachusetts
STEVE STOCKMAN, Texas AMI BERA, California
RON DeSANTIS, Florida ALAN S. LOWENTHAL, California
DOUG COLLINS, Georgia GRACE MENG, New York
MARK MEADOWS, North Carolina LOIS FRANKEL, Florida
TED S. YOHO, Florida TULSI GABBARD, Hawaii
SEAN DUFFY, Wisconsin JOAQUIN CASTRO, Texas
CURT CLAWSON, Florida
Amy Porter, Chief of Staff Thomas Sheehy, Staff Director
Jason Steinbaum, Democratic Staff Director
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Subcommittee on Africa, Global Health, Global Human Rights, and
International Organizations
CHRISTOPHER H. SMITH, New Jersey, Chairman
TOM MARINO, Pennsylvania KAREN BASS, California
RANDY K. WEBER SR., Texas DAVID CICILLINE, Rhode Island
STEVE STOCKMAN, Texas AMI BERA, California
MARK MEADOWS, North Carolina
C O N T E N T S
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Page
WITNESSES
Mr. Jose H. Velasco, vice president of product management and
head of Autism at Work Initiative, SAP......................... 5
Mr. Thorkil Sonne, founder and chairman, Specialisterne.......... 19
Ms. Theresa Hussman, board member, Autism Society................ 28
Mr. Michael Rosanoff, associate director, Public Health Research,
Autism Speaks.................................................. 34
Mr. Ron Suskind, author.......................................... 43
LETTERS, STATEMENTS, ETC., SUBMITTED FOR THE HEARING
Mr. Jose H. Velasco: Prepared statement.......................... 8
Mr. Thorkil Sonne: Prepared statement............................ 21
Ms. Theresa Hussman: Prepared statement.......................... 31
Mr. Michael Rosanoff: Prepared statement......................... 39
Mr. Ron Suskind: Prepared statement.............................. 51
APPENDIX
Hearing notice................................................... 70
Hearing minutes.................................................. 71
THE GLOBAL CHALLENGE OF AUTISM
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THURSDAY, JULY 24, 2014
House of Representatives,
Subcommittee on Africa, Global Health,
Global Human Rights, and International Organizations,
Committee on Foreign Affairs,
Washington, DC.
The subcommittee met, pursuant to notice, at 2 o'clock
p.m., in room 2200, Rayburn House Office Building, Hon.
Christopher H. Smith (chairman of the subcommittee) presiding.
Mr. Smith. The subcommittee will come to order, and good
afternoon to everybody.
The global incidence of autism is steadily increasing.
About one in 68 children have been identified with autism
spectrum disorder, or ASD, according to estimates from the
Centers for Disease Control's Autism and Developmental
Disabilities Monitoring Network. ASD is reported to occur in
all racial, ethnic and social economic groups, but is almost
five times more common among boys, 1 in 42, than among girls, 1
in 189.
Studies in Asia, Europe, and North America have identified
individuals with ASD, with an average of about 1 percent of the
population. The prevalence of autism in Africa is unknown, but
there is no reason to believe that it is any different, it
might even be worse, than other parts of the world.
I note parenthetically that Greg Simpkins and I were in
Nigeria twice in the last year, but about 10 years ago I was
there for a conference on combatting sex trafficking, something
I have worked on for many, many years and after the speech, a
man came up and said, what are you doing about autism in
Nigeria? And I said, well, nothing. And we have become good
friends ever since. He has worked with the Autism Society of
America ever since. He said there are at least 1 million
children in Nigeria who are dealing with autism, it is probably
closer to 2 million, and not dealing with it well because they
are so resource lacking.
A new study recently found that each case of autism costs
$2.4 million over a lifetime, including the expense of special
education and lost productivity for their parents. Meanwhile,
85 percent of autistic adults are jobless or underemployed. It
is therefore imperative that people with ASD are empowered to
be self-sufficient so they can not only earn money to meet
their own needs, but they also can utilize their very special
talents that they possess to contribute to society at large.
This hearing will examine some innovative strategies to achieve
that important goal.
SAP, a global software company, is working to rectify this
problem. SAP partnered with Thorkil Sonne, CEO and founder of
Specialisterne, to develop the highly successful SAP Autism at
Work program. Mr. Sonne, with his 17-year-old son Lars, who is
autistic, realized that while those with autism might lack the
social skills recruiters are looking for, they possess many
attributes high on their radar, as well, intelligence and
memory, the ability to see patterns, and attention to detail
especially on repetitive tasks.
He reasoned that it would be phenomenal if we could use
skills like we see among the autism community in software
testing, data analysis and quality controls. He says that there
is no reason why we should leave these people unemployed when
they have so much talent and there are so many vacant jobs in
the high-tech sector. SAP and Mr. Sonne will provide further
details of their extraordinary program here today.
Theresa Hussman of the Autism Society put it, I think, very
well, in work, at school and in the community, people with
autism were often faced with segregation, low expectations,
impoverished conditions and denial of opportunity that a
society committed to civil rights should find unacceptable.
Today, if you are an adult living with autism, you will
likely be unemployed or vastly underemployed living well below
the poverty line and denied access to affordable housing and so
much more.
Pulitzer Prize-winning journalist Ron Suskind will testify
in part about the success with his affinity approach. And he
points out in his testimony that for every visible deficit,
there is an equal and opposing strength. This population is
just like the rest of us only less so and more so. The question
increasingly is not if these more-so qualities exist, but
where.
Autism used to be described as a disorder characterized by
delays or abnormal functioning through the age of 3 in social
interaction, communication, or restricted, repetitive and
stereotyped patterns of behavior, interests and activities.
More recently, behavioral scientists describe a range of such
behavior, now referred to as autism spectrum disorder, which
includes a more high-functioning version known as Asperger
syndrome.
It is medically possible to diagnosis somebody with ASD as
early as 18 months or even younger, and a reliable diagnosis
can be made by the age of 2. However, symptoms might not
present themselves until later in life. Those with some form of
autism may never be diagnosed at all.
This has led to a debate over famous people, productive
people, often considered geniuses, who appear to have symptoms
of autism, especially Asperger syndrome. In the April 3, 2003,
issue of the New Scientist magazine writer Hazel Muir revealed
the debate over whether geniuses like Albert Einstein and Isaac
Newton had Asperger syndrome. Simon Baron-Cohen, an autism
expert based at Cambridge, and Oxford University,
mathematician, Ioan James, speculated that Newton, the noted
English physicist and mathematician, exhibited Asperger traits
such as hardly speaking, forgetting to eat, and giving
scheduled lectures even to an empty room.
Einstein, the German physicist, was said to have
obsessively repeated sentences until he was 7 years old and was
notoriously confusing as a lecturer. Both were highly
productive scientists, perhaps because of the kind of focus ASD
produces rather than in spite of it.
On February 2, 2005, a report by Sue Herera of CNBC
presented an interview with 2002 Nobel laureate, Vernon L.
Smith, in which he spoke in the way which autism has allowed
him to excel. ``I can switch out and go into a concentrated
mode and the world is completely shut out,'' Smith is quoted as
saying. ``If I am writing something, nothing else exists.''
During the interview, Smith who won the Nobel Prize for
inventing the field of experimental economics, admitted that he
sometimes is not there in social situations. He said that
teaching had forced him to become more social, but it was only
because he was talking about issues on which he was already
focused.
I raise the issue of intelligence and functionality because
we too often see people with ASD as victims who must be cared
for when the focus their condition produces may only allow them
to be highly successful in certain endeavors. When we begin to
look at people with ASD in this light, we can better see how
they can be enabled to contribute to society. It just requires
understanding of their potential as well as their limitations.
Many fields involving mathematics and science would allow
for the intense focus exhibited by people with ASD. Think of
the fields of analysis, intelligence, actuary science, and the
positions requiring what we commonly call number crunching. The
ability to analyze data and see patterns most people would not
recognize would be invaluable in analytical jobs.
As Nobel laureate Vernon Smith said, his disconnection from
social relationships enabled him to think outside the box, as
it were, without concern for violating social norms. He found
his condition to be an advantage in enabling greater
creativity. In our increasingly technical world, people with
ASD actually are becoming more valuable, if we can help them
overcome social disconnection and allow them to find fields in
which what we thought was their disability is actually an
advantage.
We hope today's hearing can be instructive in at least
initiating change and perspective on what people with ASD can
do to help themselves and make a contribution to society as a
whole. We must not continue to waste the talents of people who
could make their lives and ours much better.
Finally, I would like to welcome an amazing group of
individuals who have and are making an historic difference in
the lives of people on the spectrum. As Michael Rosanoff of
Autism Speaks puts it in his testimony, ``Our mission at Autism
Speaks is to change the future for all who struggle with autism
spectrum disorders.'' Each of you, on this expert panel, are
already doing that, and I thank you as chair of this
subcommittee.
I would like to now yield to my friend and colleague,
chairman of the Cybersecurity, Infrastructure Protection, and
Security Technologies Subcommittee of the Committee on Homeland
Security, Pat Meehan from Pennsylvania.
Mr. Meehan. Let me thank you, chairman, and let me thank
you for your long association and leadership with this issue,
and I think you have so importantly pointed out that this is
not just a growing issue here at home, but an issue with global
implications.
And while we focus largely on the impact that this has on
families and children here in the United States, we appreciate
that as we continue to struggle for a better understanding of
what may cause autism, a better understanding of what we may be
able to do to more effectively assist and treat those who are
on the spectrum in different capacities, an appreciation for
what may be happening in other parts of the world will be
important and vital to our understanding of the kind of
information that will help us perhaps make progress, inroads,
toward cures and otherwise.
And just as importantly, the attention you are paying to
things that are happening around the world but here in this
country with what is becoming more and more prevalent, and this
is why I am so grateful and intrigued by today's hearing. As we
see this dramatic growth in diagnoses and in the number,
particularly of boys, that are associated with this, by its
very implication, we are seeing more and more who are ageing
out of the support services that have been made available by
virtue of the state's responsibility to provide an appropriate
education.
And we are finding parents who were now dealing with
children who are now young adults and beginning to try to
transition into a life of adulthood, oftentimes parents in the
later part of their lives dealing with huge new struggles. But
one of the bright spots has been that with the progress that
has been made, we have been able to see the capacity for those
with autism at various points on the spectrum to be able to
transition effectively into meaningful lives, up to and
including meaningful contributions in the workforce, and as you
will point out, in some cases, remarkably superior capacities
to contribute to the workforce with special skills that they
bring.
And I know we will be exploring more of that with the
testimony, and I am going to be looking forward to hearing not
only the experiences, the positives and the challenges as we
look, I think, to continue to address this growing segment
which include those who are ageing out of the support systems
and will now be looking to begin a life of independence.
We need to be able to look for every opportunity that we
can to usher that support along. I thank you for your
foresight. I thank you for your leadership on this issue here
in the Congress and on behalf of all of those with autism
across our Nation.
I am very proud to have the opportunity to be here with you
today, and I want to thank you for not only this occasion but
holding a hearing on this fundamentally important topic. I am
grateful for your leadership on the autism issues, and I am
honored to have the chance to highlight some of the great work
that is being done by a company, that is a global company, but
headquartered in my district in Newtown Square, Pennsylvania.
And it is my privilege to introduce Mr. Jose Velasco. He is
the Vice President of Project Management and the head of the
Autism at Work Initiative at SAP, Incorporated. Mr. Velasco has
held a number of positions since joining SAP in 1998, and
before that founded a software company and consulted for
Fortune 500 companies. He is also the proud father of two young
adults in the autism spectrum. I am delighted to have the honor
of introducing him to the members of the subcommittee.
Mr. Smith. Next on the list is Mr. Thorkil Sonne, who is
the founder and chairman of the Specialisterne and Specialist
People Foundation with the goal of enabling 1 million jobs for
people with autism and similar challenges. He first became
involved in autism when his son Lars was diagnosed with
infantile autism in 1999. He became active in the Danish Autism
Society eventually leaving his position at an IT startup
company to establish Specialisterne in 2003. Mr. Sonne is now
based in the United States where he is driving the expansion of
that Specialisterne model with a goal, as I said in my opening,
of enabling 100,000 jobs for people with autism and similar
challenges.
We will then hear from Ms. Theresa Hussman, who is a board
member of the Autism Society and a director of the Hussman
Institute for Autism, a research institute established to
improve the lives of individuals with autism and their
families. She is also the project coordinator for the Hussman
Foundation in this capacity. She conducts the review and
processing of grants, coordinates and attends status meetings
on existing and potential grants and partnerships, and
represents the foundation at charitable events. Ms. Hussman is
a parent of a young adult son with autism, and in 2013 was
appointed as an advisory member of the Howard County Transition
Council for Youth with Disabilities.
We will then hear from Mr. Michael Rosanoff who is a member
of the Autism Speaks science team and manages the
organization's epidemiology and public health research projects
focused on understanding the prevalence and the causes of
autism. Since joining the organization in 2007, he has been
part of the development team of the Global Autism Public Health
Initiative, an effort designed to increase awareness of autism
and improve access to services through the collection of public
health data and training of providers worldwide. Mr. Rosanoff
is also a member of Autism Speaks' grants division, helping
oversee the organizations grants giving process for autism
research which has committed over $200 million to date.
We will then hear from Mr. Ron Suskind, who is a Pulitzer
Prize-winning American journalist and best-selling author. He
was the senior national affairs writer for the Wall Street
Journal from 1993 to 2000 and has published many books, and
most recently his memoir, ``Life Animated: A Story of
Sidekicks, Heroes and Autism,'' which explores his own son's
own struggle with autism.
Since the book's publication, Ron has traveled the country
as an autism expert speaking to audiences at the United
Nations, the NIH, University of Chicago and Harvard and, of
course, the House of Representatives. He is currently senior
fellow at the Center for Ethics at Harvard University.
So if all of you could please come and provide your
testimony.
STATEMENT OF MR. JOSE H. VELASCO, VICE PRESIDENT OF PRODUCT
MANAGEMENT AND HEAD OF AUTISM AT WORK INITIATIVE, SAP
Mr. Velasco. Mr. Chairman, members of the subcommittee, I
submit a copy of my written statement for the record, if you
allow me to summarize it.
Mr. Smith. Sure. Without objection, all of your longer
versions and any materials you would like to be made are part
of the record is so ordered.
Mr. Velasco. Thank you. SAP would like to thank you for
your leadership and for providing us the opportunity to share
our views on autism and its global impact.
My name is Jose Velasco. I am head of the SAP Autism at
Work initiative in the United States. As you may know, SAP is a
global leader in enterprise software with more than 67,000
employees providing business solutions for over 250,000
customers in more than 130 countries.
SAP systems are at the core of large parts of global IT,
powering more than 65 percent of the transactions that make up
the world's gross domestic product, or GDP. With the current
estimate of 1 in 68 children affected by autism, and estimated
unemployment rate of 70 to 80 percent and an annual cost to the
United States in the range of $175 billion to $196 billion, SAP
recognizes the magnitude of the emotional and financial impact
that autism has in communities around the world.
SAP also recognizes that there is a real opportunity to
leverage the skills of people with autism in the workplace,
specifically based on our experience in the technology sector
where some of the skills traditionally found in people with
autism have a strong affinity with the capabilities needed by
companies in our line of business.
SAP also believes that the cornerstone element of
innovation is the diversity and perspectives of those who
participate in the creative process, including those with
autism. In support of these views and in support of SAP's
mission to help run the world better and improve people's
lives, SAP, in partnership with Specialisterne, announced in
May 2013 the inception of the global Autism at Work initiative,
a unique effort to train people with autism worldwide with the
purpose of providing meaningful and rewarding employment
opportunities in core functions of our company such as software
development, software testing, customer support, and internal
IT functions at SAP, among other positions.
SAP's objective is that by the year 2020, 1 percent of its
workforce will be represented by people in the autism spectrum,
roughly, 650 positions based on SAP's current global workforce
of about 65,000 employees. Since this announcement, SAP has
successfully implemented pilot programs in India, Ireland,
Germany, Canada, and the United States and is in the early
planning stages of a pilot program in Brazil.
SAP is also evaluating the implementation of pilot programs
in other locations that may include China, France, Bulgaria,
and South Africa. It is expected that at the end of 2014, SAP
will count approximately 55 colleagues with autism worldwide,
and that by the end of 2015 the number will increase to more
than 150.
SAP has executed this vision globally with Specialisterne
and locally in the United States in cooperation with Department
of Rehabilitation of the State of California, the Office of
Vocational Rehabilitation of the State of Pennsylvania, and
their service providers ExpandAbility and the Arc of
Philadelphia. SAP has leveraged the strength of its partners to
create a new, simple, and sustainable process to accommodate
our new colleagues. Processes such as nontraditional
interviewing methods, preemployment training, on-the-job
coaching and SAP personnel autism awareness training.
Chairman Smith, the ultimate goal of diversity and the
Autism at Work program is to provide and attract the best
possible talent to our company no matter what this talent looks
like. We hire our new colleagues in spite of autism. As in
spite of the challenges associated with this condition, these
new colleagues have arrived at our door, displaying resiliency,
loyalty, dedication and, most importantly, a burning desire to
work.
We also hire people because of autism, as we are able to
leverage the innate abilities oftentimes associated with the
condition, including a gifted memory; a natural ability to
recognize patterns and deviations in systems or data, which is
very much in scope for us; and the ability to concentrate and
persevere on tasks over a long period of time while remaining
attentive to the smallest details.
We have a long journey ahead of us with many things to
discover, but we feel confident that with the help of our
partners we will be able to continue to leverage the talents
and skills of people with autism. We also feel very confident
that soon more companies will have similar programs. SAP has
been approached by more than 15 companies interested in
understanding how our program was conceptualized and
implemented.
On behalf of SAP's diversity and inclusion office, our new
colleagues with autism mainly, and on behalf of the SAP
employees who have made this initiative possible, we would like
to thank you once more for this opportunity to share our
experience.
On behalf of the many families like mine who are touched by
autism, thank you for your leadership and for your attention. I
would be more than happy to take any questions that you may
have.
Mr. Smith. Mr. Velasco, thank you very much for your
testimony and your leadership.
[The prepared statement of Mr. Velasco follows:]
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Mr. Smith. I would like to now yield to Mr. Sonne.
STATEMENT OF MR. THORKIL SONNE, FOUNDER AND CHAIRMAN,
SPECIALISTERNE
Mr. Sonne. Thank you, Chairman Smith, for your leadership
in this area and thanks for the opportunity to address the
global autism challenge here. I have prepared a written
statement which I ask to enter into the record.
Mr. Smith. Yes, without objection, it is part of the
record.
Mr. Sonne. Thank you.
So my messages is here, if we take a global job approach to
the autism challenge, we can actually unlock a lot of hope,
action and impact in the U.S. and globally, and we can create
value for all the stakeholders in our society.
My background is as a father of a young man with autism, as
a social entrepreneur, as a businessman, and as a former chair
of a local branch of Autism Denmark. I founded Specialisterne
10 years ago to train, assess, educate and employ people with
autism, and I am happy to be an American resident now since
August of last year, to lead the activities in the U.S.
Parents whose sons or daughters have autism are, in my
eyes, part of a global family. That goes beyond borders,
culture, economy, tradition. We share very much the same
destiny. We have gone through the same emotions, and I have
been contacted by parents of kids with autism in about 90
countries, and they have asked me to help make a change in
their nation and when parents with autism make contact with me,
I cannot say no. I can say, be patient. We will find a way. We
will get there.
Many families are stuck in their own struggle of concern,
despair, and fights. All are driven of the fear of what will
happen to our loved ones when we are not their to fight their
battles anymore. As long as the parents are able, we will fight
the battles, but at some point in time, we won't have these
resources anymore. But what if we can give these families a
hope that there will be jobs. There will be employers who will
respect that people are different and appreciate that talent
comes in different shapes.
What if employers are willing to accommodate a working
environment where the individual can excel even if they have
autism? Well, today you heard from a great example of such an
employer, SAP. So I think the question is, how can we as a
global family, as global stakeholders, help companies like SAP
who want to get access to talented people with autism around
the world?
I founded Specialisterne as a social enterprise, to solve a
social challenge with a business model. We now have 10 years
experience in unfolding talent among people with autism and put
these talents to good use when we can match the individual's
comfort zone with the work zone. The goal is 1 million jobs,
100,000 in the U.S., another 100,000 in Africa. What we learn
in the U.S. through partnerships with businesses, with NGOs
that work with people with disabilities, we need to bring to
Africa and all continents.
In Africa, in particular, we need to empower the families.
We need to give them hope. We need to help go from hope to
action through social entrepreneurship and to provide a model
for impact where big business, academia, governments, and the
education system can work together to create jobs. I see social
entrepreneurship as a great tool and a great resource in
Africa.
There are 350 social entrepreneurs in Africa supported by
Ashoka which select social entrepreneurs with potential to
change the local environment in which they act. I am an Ashoka
fellow. I am also a Schwab Foundation Social Entrepreneur. They
have conferences on Africa. They are connected with the World
Economic Forum. When we can connect these stakeholders then we
can help release the parent power, turn that into social
entrepreneurship that can work with big business and with
governments and other stakeholders.
Just imagine if we can invest in creating jobs for people
with autism and assist the education system to identify and
support differently-abled students with autism in the U.S.,
Africa, and globally. With a job creation approach to the
global autism challenge, we can really make results that will
make a lot of sense from a family, a health, a human rights, a
business and a financial perspective.
Thanks again for your leadership in this, and I will be
happy to answer any questions.
Mr. Smith. Thank you very much for your leadership as a
pioneer and that vision of 1 million jobs, 100,000 in the U.S.,
couldn't come at a better time. Like Victor Hugo once said,
nothing is as compelling as an idea whose time has come. So
thank you for your pioneering work.
[The prepared statement of Mr. Sonne follows:]
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Mr. Smith. Ms. Hussman.
STATEMENT OF MS. THERESA HUSSMAN, BOARD MEMBER, AUTISM SOCIETY
Ms. Hussman. Congressman Smith and members of the
committee, it is my pleasure and honor to be asked to appear
before you and to talk about what we believe is the most
critical and important need for over 3 million individuals who
have an autism diagnosis.
My name is Theresa Hussman, and I am a dedicated volunteer
of the Autism Society of America, the Nation's oldest and
largest grassroots national autism organization. Our
organization's president, Scott Badesch, is currently hosting
1,000 people at our national conference in Indianapolis, and he
asked me to come and present the testimony for him.
With over 105 affiliates serving close to 1 million people
each year, the Autism Society national network works each day
to improve the quality of life for all who live with autism. We
do this in ways that are outcome-based, and I am proud that we
are fully inclusive having individuals with autism, family
members, professionals and community leaders in all parts of
our governing and advisory boards.
In addition to serving with the Autism Society of America,
my husband John and I are the very proud parents of four young
adults, one of whom has autism. Over the past decade, we have
been among the largest private funders of autism research and
recently established the Hussman Institute for Autism, a
research institute founded on the principles that people with
autism have far more competence than they may be able to
demonstrate or that society allows them to achieve. I want to
commend this subcommittee, and especially the leadership of
Chris Smith, for holding this important hearing.
A few years ago, there was a video that went viral of a
young man with autism named Jason McElwain, they called him
``J-Mac.'' He spent his high school years as a manager of his
high school basketball team because he had a passion for the
game. In his senior year, he was allowed to play 4 minutes and
19 seconds of a game. During that time he made 7 baskets, 6
points of which were 3-pointers. While millions who watched
celebrated that brief moment of opportunity, those of us who
advocate for our loved ones with autism also asked why wasn't
he on the court the whole year?
In school, at work and in the community, people with autism
are often faced with segregation, low expectations,
impoverished conditions and denial of opportunities that a
society committed to civil rights should find completely
unacceptable. Today, if you are an adult living with autism,
you will likely be unemployed or vastly underemployed, living
well below the poverty line and denied access to affordable
housing and much more.
The most agreed-upon rate of unemployment or
underemployment among adults with autism is close to 70
percent. Think for a minute, if any other group of individuals
in our Nation had such a high rate of unemployment. While
companies are now starting to move in the right direction to
address this dire statistic, including SAP, AMC Theaters,
Walgreens, UPS, EMS Insurance and many more, the reality is
that behind each of those statistics is the lack of our
Nation's attention to fully integrate those living with autism
into our mainstream society.
Though universal access is often expected of our buildings
and of our stairways, our society has yet to build that
universal access into our schools, our curricula, our
workplaces, our hearts, and our minds. A person living with
autism has every right to be included in the mainstream of
society, but it isn't occurring.
Ask almost any parent of a school-aged child with autism
about their struggles with public school systems, and they will
tell you story after story about lack of inclusion, denial of
rights, and inadequate educational supports. You will hear
about schools that underestimate children with autism and limit
their educational opportunities. While we watch the number of
children diagnosed on the autism spectrum increase, we fail to
prepare these educators, para-professionals and school
administrators to properly support their students with autism.
Yet, every one of them will come across a child on the spectrum
every day.
Many school districts and superintendents fight against
laws that would regulate the harmful impact of restraints and
seclusion on innocent students with autism. Even though
research has demonstrated that these approaches are entirely
unnecessary when people with autism are provided with
appropriate, positive behavioral support.
Many colleges define their commitment to educational
opportunities for a person with a disability as being little
more than some extra time to take a test. It is rare to find a
school leader who is held accountable by his or her governing
board for the success of students with disability. Autism
creates enough barriers for individuals to demonstrate their
ability and to engage with their community. We need our Nation
to lower those barriers in every aspect of life, not to build
them higher.
With respect to employment, too many public schools and
colleges are not addressing the educational and job skill
development needs of our students with autism, leaving adults
with autism untrained or unprepared for employment.
Fortunately, many employers are now beginning to advance their
hiring of autistic adults, and they demonstrate that if given a
chance, an adult with autism will be an outstanding employee.
Oftentimes, the Federal Government reinforces the
perception that individuals with autism and for that matter any
developmental disability can't work in meaningful jobs. In the
State of the Union address, President Obama suggested a $10.10
minimum wage for workers paid through Federal grants and
contracts. But it is so common to underestimate and marginalize
workers with a disability that they weren't originally part of
this effort. Fortunately, many organizations including the
Autism Society advocated for inclusion of individuals with a
disability in that Executive order, and we are proud that the
President assured inclusion of workers with a disability.
At the Autism Society, we believe that educational
inclusion, employment opportunities, and equal participation in
community life are civil rights. As in other civil rights
struggles, our Nation needs the moral conscience to embrace
people with autism as different, not as less. The answers are
not difficult. First, we must ensure that every government
agency and body respects the value and dignity of each person
living with autism, or for that matter, any disability.
Secondly, we must assure that if a government entity is helping
all people, it does so in a way that is inclusive of those with
autism.
We must also ensure that people educational institutions
are held accountable for seeing that students with a disability
are provided the same level of educational opportunities as
those without a disability. We know that those few educational
institutions that do provide a high commitment to opportunity
for students with a disability are showing that with support, a
student with a disability can be successful.
A strong example is Marshall University in West Virginia,
and Evan Badesch, who is the son of our organization's
president. With proper support and Evan's amazing desire and
commitment to obtaining a quality education, he is succeeding.
This is because the university, from its wonderful President
Dr. Stephen Kopp to all of the faculty, are fully committed to
ensuring that every student, regardless of their condition, can
succeed. They see the value of such success and they know it is
the right thing to do.
The Autism Society believes that we also must change the
national discussion regarding autism from simply cause and cure
to one of hope, acceptance, support, and opportunity. We can
seek to improve the lives of people with autism without sending
the message that they are not yet enough to be loved, valued,
and accepted as they are.
Finally, and we believe this is critical, we must focus our
efforts through a private/public partnership that does not rely
on Government to do it all. I again, want to commend
Congressman Smith who is working with us in addressing adult
services in a way that assures maximum opportunities by
advancing proven best practices through a public/private
effort. People with autism deserve more than 4 minutes of the
game. Real change that embraces them in the mainstream of our
society will only come when we all work together.
I thank you for your very important attention to this
critical matter, and I would be happy to answer any questions.
Mr. Smith. Ms. Hussman, thank you very much for your
testimony and for the perspective that you bring to this.
[The prepared statement of Ms. Hussman follows:]
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Mr. Smith. And the long advocacy of Autism Society of
America, I have been involved since 1980, and I will never
forget when we had a game-changing moment in my district in
Brick where we thought there was a prevalence spike, and I
introduced the bill called the Assure Act, which is really the
Combating Autism Act, it is almost identical with some tweaks.
And CDC and NIH were against it and thought it was a solution
in search of a problem.
I will never forget it. It was, you know, really difficult
to understand the lack of interest given the example CDC spent
$287,000 per year on their entire program. I mean, that doesn't
buy a desk and one or two people. And I often ask them, what do
you do? It took 3 years to get the bill passed. It was title I
of the Children's Health Act.
And the reason why I mentioned it, the Autism Society was
instrumental throughout that whole process gaining cosponsors
and educating and educating and educating members who, again,
many of whom at the time, typically in 1997, 1998, shared the
view that this was extraordinarily rare, 3 in 10,000 was the
number when I got elected, and a lot of us clung to that as,
well, that must be the number. So thank you for that
longstanding leadership.
Mr. Rosanoff, I am going to recognize you in a moment but
there is a vote on, a couple votes. We will take a recess. And
several members have said they wanted to be here and they will
come, I am sure. But this is, I think, an opportunity to round
them up. Thank you. We will stand in brief recess.
[Recess.]
Mr. Smith. The subcommittee will reconvene and continue
with this hearing.
And I recognize Mr. Rosanoff.
STATEMENT OF MR. MICHAEL ROSANOFF, ASSOCIATE DIRECTOR, PUBLIC
HEALTH RESEARCH, AUTISM SPEAKS
Mr. Rosanoff. Thank you.
Chairman Smith, Ranking Member Bass, members of the
subcommittee, thank you for the opportunity to share Autism
Speaks experience working with autism communities around the
globe.
My name is Michael Rosanoff. I am the associate director of
public health research at Autism Speaks. Since 2007, I have
managed the organization's epidemiology research portfolio,
research focused particularly on measuring the prevalence and
economic cost of autism in the U.S. and worldwide. I am also a
member of the organization's international scientific
development team helping lead Autism Speaks' Global Autism
Public Health Initiative, currently active in over 50 countries
around the world.
I am formally trained in public health and epidemiology and
have a personal family connection to autism. Our mission at
Autism Speaks is to change the future for all who struggle with
autism spectrum disorders. This can mean funding scientific
research for those families struggling to understand the causes
of autism; it can mean developing strategies to help those
struggling to overcome barriers that limit access to effective
services; or it can mean providing support for those struggling
to receive acceptance and opportunities to contribute to
society.
Because autism knows no ethnic, cultural, or geographic
boundaries, neither does Autism Speaks. In 2007, the United
Nations adopted a resolution recognizing April 2 as an annual
day of world autism awareness. In response to the increase in
awareness worldwide and with it the increase demand for
information and support, Autism Speaks launched the Global
Autism Public Health Initiative in 2008, with the objective to
develop sustainable, broad-reaching and culturally-sensitive
programs that build local capacity for autism research and
service delivery. This is accomplished through multidirectional
knowledge transfer and multinational collaboration among
diverse stakeholders.
In just over 5 years, our international team has traveled
more than 1 million miles and spoken with hundreds of affected
individuals, parents, professionals, and government officials.
Today, I would like to offer you some of our experiences and
important lessons learned.
The autism community is diverse, with a diverse set of
challenges and a diverse set of strengths. As autism is a
lifelong condition, those challenges and strengths often change
over the course of time, thus, there is no single one-size-
fits-all solution to improving lives of those touched by
autism. Autism is not simply a health issue but also an
educational issue, a social welfare issue, and a human rights
issue. The most effective strategies are those that are
comprehensive and multi-sectorial.
For example, in developing a national strategy for autism
in Bangladesh, the government established an inter-ministerial
task force to implement a coordinated plan of action across
eight government ministries, including health and education,
also social welfare, labor, and even finance because to achieve
a truly inclusive society, autism is as much a labor and
finance issue to increase employment opportunities as it is an
education issue to achieve inclusive education.
Across countries, while cultures, belief systems, public
health infrastructure, and resources may differ, all families
around the world want the same for their loved ones with
autism: Improved awareness to reduce stigma; statistics to know
they are not alone; to advocate for policies, increased access
to evidence-based services earlier in life and throughout life;
and more opportunities for individuals with autism to reach
their fullest potential in life and society, especially after
their caregivers are gone.
Common goals mean that common approaches can be effective
across diverse settings which makes cross-country collaboration
and idea sharing so important. Approaches do, however, need to
be tailor-fit to different country contexts. What may be an
effective strategy in one may not be feasible in another.
Strategies must be adapted to fit the environment while
maintaining their active ingredients.
Today, the most practical and effective approach to
increasing autism support is through community-based programs.
The purpose of these programs is to relieve some of the demand
placed on the few highly-trained professionals in clinical
settings by transferring skills and knowledge to members of the
community such as health workers, teachers, and parents.
To help create a package of care that is transferable,
especially in low-resource settings, Autism Speaks has teamed
up with the World Health Organization in developing the
intervention guide and training program to the delivery of
autism services by community health workers in nonspecialized
settings.
The model is currently being used in Ethiopia as part of a
project funded by Autism Speaks and as a result of the initial
success of the program, the Ministry of Health of Ethiopia has
made autism and mental health in general national priorities.
They are currently organizing a conference on the scaling up of
mental health services in the country. The WHO and Autism
Speaks are also exploring models for parent training and the
delivery of autism interventions.
These activities with the WHO were among those identified
as priorities as part of an international consultation on
autism. The first of its kind meeting in the history of the WHO
took place in Geneva last September. More than 75
representatives from nearly 50 different international
organizations participated, and among the most discussed and
highly-prioritized issues were community inclusion and adult
employment. This comes as no surprise considering that based on
current best estimates of autism prevalence, every year tens of
thousands of children with autism become adults with autism.
How are we preparing them for society and is there adequate
opportunity for them to pursue employment and independent or
assisted living?
In Geneva, we heard about innovative models for identifying
unique talents of individuals with autism that would make them
valuable assets to an employer. Two of those models came from
Specialisterne and SAP, both of whom you have heard from today.
But there is nothing like seeing the success of models
firsthand, models of community inclusion and practice.
In Bangladesh I visited a center for individuals with
disabilities in a small, rural community on the outskirts of
the capital city Dhaka. The community itself surrounding the
center was unlike any I had seen before. Well, it looked like
other roads I had seen elsewhere in Bangladesh with small shops
and markets selling clothing and groceries. The difference was
that individuals with disabilities including intellectual
disabilities and autism staffed all the shops. Not only were
these individuals learning employable skills such as counting
money at the register, but they were bringing money into their
community and, most importantly, raising awareness of
disabilities.
I also had the great fortune to travel to Lima to visit the
Centro Ann Sullivan de Peru, or CASP. CASP is a center for
individuals with different abilities, not disabilities. It
first opened its doors over 30 years ago in a garage and now
has hundreds of current students and past graduates. The
curriculum is community based, where 30 percent of services are
delivered at CASP, and 70 percent are delivered at home in
real-world settings.
Students learn real-world tasks needed to survive in a city
environment such as using mass transportation. That is a skill
they will need to be able to get to and from a job. A goal for
all students at CASP is to get a job. That is not just true for
those with autism who are less severely affected. Even those
with greater challenges often have or can learn skills that are
attractive to employers and these individuals can be successful
in a career with the right support.
Importantly, the staff at CASP works with members of the
community such as the bus drivers and employers to educate them
about autism which in turn perpetuates a more inclusive
society. In a resource-poor country like Peru, it is not
uncommon for graduates of CASP to actually become the family
breadwinners, earning enough money to help support the entire
family. Why couldn't this model work elsewhere?
This brings me to a lesson learned: We must not overlook
that knowledge transfer goes both ways. We can learn as much as
we can teach, if not more by working with autism communities
from around the world. Countries and regions with limited
resources and professional capacity had been for years
developing innovative solutions to overcome the gap in autism
services and the challenges to community inclusion that we
experience even here in the United States.
In just the last few years, the pace of development for
autism has accelerated rapidly and globally. A new United
Nations General Assembly resolution adopted in December 2012
increased the commitment and accountability of governments
worldwide to address the social and economic challenges of
autism. And following the WHO consultation, the World Health
Assembly adopted a resolution that provides a framework for the
enhancement of national health systems to include autism
services.
Many countries have since developed national autism action
plans and passed autism legislation. For example, in Africa,
the country of South Africa for the first time has a framework
for mental health including developmental disabilities and
autism. And earlier this year, 14 African nations participated
in an autism Congress sponsored by Autism Speaks in Ghana,
where the First Lady of Ghana and the Minister of Health in
Tanzania committed to enacting change for the autism
communities of their countries.
Worldwide, governments are listening and the commitment is
there; however, know-how and capacity are often not. The final
lesson learned I would like to share today is that legislation
does not necessarily translate into action. Many of the autism
laws passed in recent months around the world are well-
intentioned but lack the strategy and resources to implement
properly. In some cases, poor execution leads to unsuccessful
programs that may actually hurt the chances for future support.
More concerning is that hope can turn to helplessness for
members of the autism community under these conditions.
In India, there have been inclusive education laws in
effect for many years, yet true school inclusion has not been
achieved. I just returned last week from a consultation in New
Delhi with the World Bank working with the disabilities and
education communities to develop and improve strategy for
inclusive education in India.
It is clear that you cannot simply put children with autism
into a classroom without properly training the teacher and
educating the students. Furthermore, in a place like India, you
cannot simply train a teacher only on autism where there are
many other children with other disabilities that also have a
right to inclusion. It is important that we consider working
with and learning from other disability advocates as we aim for
acceptance and inclusion for our loved ones with autism.
Autism is a highly prevalent and highly costly condition to
societies around the world. At least 1 in 68 children in the
U.S. has an autism spectrum disorder, and research suggests
that prevalence may be the same or higher elsewhere around the
world. A recent study estimated that the costs to U.S. society
are $236 billion per year, with much of that cost due to adult
residential care and loss of productivity for both caregivers
and adults with autism, many of whom could be earning greater
income.
The time to act is now, and there are already models
available that are improving access to services and promoting
community inclusion around the world. By working together and
learning from one another, we can change the future for all who
struggle with autism worldwide.
Thank you for your time, and thank you to the many
families, professionals and government officials who have
welcomed Autism Speaks to their countries to learn from their
experiences.
Mr. Smith. Mr. Rosanoff, thank you very much for your
testimony.
[The prepared statement of Mr. Rosanoff follows:]
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----------
Mr. Smith. We are joined by Chaka Fattah from the
Appropriations Committee and with whom I have worked for years
on a number of issues especially with respect to brain health.
Mr. Fattah. Well thank you, Mr. Chairman. Let me thank the
panel.
I am not a member of the subcommittee, but the chairman and
I have worked together on a number of important issues
including safe blood in Africa, which has been credited with
helping millions that live and have increased life chances on
cord blood, but of late, over these last few years, working on
neuroscience or brain-related illnesses, and we have launched
legislation to create a global Alzheimer's fund.
But today, we join together, and I am cosponsoring his
legislation on autism, and this is some very important work.
Now, Ron, in your testimony, you refer to----
Mr. Smith. He hasn't talked yet.
Mr. Fattah. Oh, he hasn't talked yet. Okay.
Well, thank you, Mr. Chairman. I will yield. I want to hear
his testimony. I will wait until he testifies and then I will
ask. Thank you.
Mr. Smith. We now recognize Pulitzer Prize winner, Ron
Suskind. Please proceed.
STATEMENT OF MR. RON SUSKIND, AUTHOR
Mr. Suskind. Thank you, Chairman Smith and all the members
that are here today on this busy day. Thank you for giving me
an opportunity to speak in a forum like this.
As many of you know, I have been in this town for some
decades, usually on the other side of these various tables,
walking around with my pad and my tape recorder, writing for
the Wall Street Journal, writing six books now. This last book
is my sixth, and seeing a town that is often locked in a kind
of zero-sum conversation. One person's benefit is another
person's loss. Pie is only so big. This is not one of those
conversations, which gives me some hope. This is as close to a
win-win as you usually get in a town like this.
What we have here is a community that we are now
increasingly identifying as folks who can lead their own pass.
For every dollar we spend to help them, we know if we look at
Thorkil's model, we look what SAP is doing, they will return
many dollars in all the ways our economists love in
productivity, in independent life, and save extraordinary
amounts of money that frankly they don't want us to spend
anymore than anyone does.
In a tight Federal budget saying several hundred billion a
year is money we do not have. We are at a point of inflection
in this debate, which is why I am hopeful. I am hopeful to hear
what is being said at the table and what is being said from the
dais where elected representatives say, ``I get this.''
You know, I have been at this for a long time, and I have
traveled the world during the last 20 years talking to people
who had been left behind, in urban America, in Afghanistan, in
Pakistan and what I find with many of them, they are living a
life that is context blind. Now, we know that term from our own
kids. It is often said that autistic kids are context blind.
Well, I say, yes, in some ways they are context deep.
But the context that we reward, the one that is kind of the
shared context, picking up queues of knowing who is where and
where they sit, what they come to the table with, all that kind
of social engagement context. I think we reward that too much,
and we will find going forward that we are often better off
embracing its counterpoint which is difference, which is the
deep well of variance and the deep power of distinction.
You know, many of those kids from Afghanistan and Pakistan,
I sit with them. I am like, the kid is unlettered. He is
context blind. But he is improvisationally gifted, born of
survival, born of the ingenuity that comes from survival and in
Southeast Washington, where I reported for years, I found the
same thing. I wrote about a kid, the stories that won the
Pulitzer Prize. What does he do? He doesn't learn the basic
block and tackle of education. His brain, and we know the brain
is ever shaping itself, has not been shaped that way. He didn't
get that shaping from an education system.
So he is in a tough spot at Brown University, the one guy
in a decade from his inner city school here at Ballou High
School to make it. He is caught. What does he do? He writes a
68-line epic poem on heterogenous and homogeneous grouping. He
has an affinity. This affinity, in terms of poetry and rap
music, he finds a way to use that to dissect a complex issue of
education.
Now, I want to give that guy a prize and society does, too.
What we are seeing is the one-size-fits-all model that rewards
some traditional learners, folks who get the game and how it is
played. Well, it is discarding too many people in a society
that cannot afford to do that. We are throwing away too much
human capital, possibility and potential, and the canary in the
coal mine, I think, is this population that we are talking
about today. Absolutely. They are exactly like us, just extreme
versions, all right.
Now, I know we want to say this is a terrible illness and a
Holocaust. I felt that. My son is 23. We have been at it for 20
years. And there are times where you say it is a tragedy. But
then over time, all of our kids have said, hmm, I wouldn't use
that word actually. Because I can do some things. Look what I
can do. If you just listen and don't try to make me more like
you but help me be more like me in a nourished and supported
way, I can show you stuff.
And that is what happened in this story. Traveling the
world, talking to the disenfranchised, sitting with them in mud
huts, sitting with them, caught in terrible circumstances of
violence often borne of bigotry, of violent tribalism. What do
I find? 1993, I find the most significantly disenfranchised
person I have met is living in the bedroom on the second floor.
It is my son.
He is whacked with autism just shy of his third birthday.
Chatting away, late onset, they call it. I love you. Let's get
ice cream. Where are my Ninja Turtles? At two and then we moved
to Washington where I became the senior national affairs writer
for the Wall Street Journal. Big moment for the family. On our
way up. Everything seemed just right. I was full of certainty
and smugness. All working out. My mother was just so proud of
me.
And then we got whacked and then Owen started to vanish.
Late onset autism, usually between 18 and 36 months. He lost
function. First, he wouldn't look at us, then he wouldn't talk
to us, then he could not speak. The few-hundred-word, 2\1/2\-
year-old vocabulary ends up being one word a few months later.
And then we heard the first word of regressive autism.
Autism. We didn't know much about it. Now, the chairman
talks about pushing forward legislation in 1980. What did the
public know of autism in 1980? Well, not very much. But even
back then, there was talk of the refrigerator mothers. Well, in
1988, most of our education happens because most of us here saw
``Rain Man'' with Dustin Hoffman. That is mostly what we knew.
Rain Man Babbitt and when we got that diagnosis, we said, there
is no way my son is that guy. We embraced denial, which is a
powerful force, not one I recognized as powerful as it is back
then.
So here is a story as it unfolds. He loses speech. He is
alone. The world is talking to him like Charlie Brown's
teacher. Wah, wah, wah, wah, wah, wah. Charlie Brown. He can't
even hear the Charlie Brown. The one thing, though, that seems
to give him comfort, the only thing, is the thing he loved
before the onset of the autism, the Disney animated movies. I
am like, this can't be. I mean, not Disney. But yes, Disney.
So what we did together as a family is the only thing we
could do as a family. Of course, I have an older son, 2\1/2\
years older than Owen. We watched the animated movies up in the
upstairs bedroom of our Georgetown house not far from here, the
only thing that seemed to give him comfort. Now, at this point
my son is murmuring gibberish.
At this point, he is talking like baby talk because he has
lost speech and he is back to the early antecedents of speech
where babies murmur gibberish, and he is saying, ``juicervose,
juicervose, juicervose.'' My wife thinks he wants more juice.
Doesn't want the juice. But we are upstairs watching a movie
called ``The Little Mermaid.'' Anyone here seen that movie?
Yeah. Yeah. The chairman has seen it, so I think everyone
should raise their hand. We have all seen it. Yeah. Yeah. He
has the power of the chairmanship.
And Ariel, you got it. No, you are on it, you know. Which
character? Do you think King Triton is kind of your guy? Is
that your character? Yeah. I mean, look, I think it works.
Yeah.
Mr. Chairman is the sidekick that helps the hero fulfil her
destiny; that is not Triton. That is a different character.
More Sebastian. Sebastian is good. Watch the movie. He is the
one you want to be.
So, we are watching the movie up in the bedroom. It is the
part where Ariel, the protagonist, wants to transform herself.
To become human this mermaid, she must make a trade with the
villain, the sea witch who says, I won't cost you much, a
trifle really, just your voice. Owen rewinds. You know, his
motor function has collapsed except the rewind button. That's
good, he rewinds it again. His brother says Owen, just watch
the movie. All of a sudden Cornelia says to me it is not juice.
I said what? It's not juice. It's just. Just your voice. I grab
Owen, silent for a year, and he looks at me for the first time
in a year and says juicervose, juicervose, juicervose. This is
our moment. We called it our Helen Keller/Anne Sullivan moment.
Our specialist said don't be so sure. This is called
echolalia. They memorize sound. They don't know what the words
mean. This is often the way we see this population. If they
can't express it, it doesn't exist. They can't show and tell of
their emotions, we assume there are no emotions to offer. That
is the way we used to think. It is changing. But this is 1994,
and our therapist said echolalia. I said is that like what it
sounds like? That's right, like a parrot. That is right. We
went through several years of this. Several years where he is
murmuring lines from movies.
What do we find to make this story come to its crest? We
find he memorized 20 Disney animated moves of sound alone, and
if you threw him a line, he would throw you back the next line.
We spoke in Disney dialogue for years. I mean because
everything is in the 50 animated Disney movies and ``Snow White
and the Seven Dwarfs.'' I mean what is not in there? So he
would just pick a scene. At the beginning it was ``The Jungle
Book,'' I am Baloo. I know the height thing doesn't really work
but you know I am kind of goofy. My wife is Bagheera, the
panther, protective. That worked, that is type casting. His big
brother is King Louie, and Owen of course is Mowgli. He throws
you a line. You throw him back the next line.
Over years we became animated characters, and this is how
he gets his speech back. Took a couple years, but it happened
and then, he turns the hundreds of hours of memorized dialogue
and lyrics into an emotional language all his own, invented
one. Inventing an emotional language. That's something that
gets a big bell rung. Then he developed a life philosophy and
he writes a story at the end of the book ``Life Animated,'' my
book, which is his original story.
Now, what does this tell us? This tells us a profound thing
that maybe people know anecdotally at this table and society is
learning by the hour, that these affinities, every kid has got
one. Often they have several but usually one more than others.
They are like life boats for these kids. Over the many decades
with autism, the view was wean them off of it. It is
perseverative, it is wheel in the ditch, it is obsessive.
Definition of obsession, interest to the exclusion of all else.
Well, that is the way they are built. They can't dance around
like bees going flower to flower. They lock on. They are not
foxes. They are hedgehogs.
Again, they are like us, extreme versions of us. This is
what we learn against our will. The years we locked the
television set because he was doing all-night movie marathons,
and we were just going crazy. At times we said let's use it as
a behavioral tool. If you want to watch your favorite video,
here is ten things you've got to do, each like walking across
hot coals. His behavior spiked a little, a little improvement
at school but then trailed off. Like we had cut him off from
his supply line.
We tried everything until finally my wife in her wisdom
says, respect his affinity, enjoy it with him. Look we can't
try to fix him every minute. That is not a parent-child
relationship, not one that works and then we got in the
basement with him, and we danced and we sang and we played
characters; and he knew we weren't going to pull the rug out
from under him. That is the key because we see these
affinities, and they can see we are impatient. And we know they
are across the landscape.
Some kids are into Disney. Lots of Disney. I would say the
predominant one frankly, but a lot are animated. There is
Thomas the Tank Engine, there are maps, there are train
schedules. A parent came to me and said black and white moves
from the 40s and 50s. I am like really? How old is he? He is
14. There is a lot to work with there. Get in there with him.
Speak 40s black and white movies, speak map, speak Disney.
Here is the key. What they learn and what my son learned in
terms of basic education, general knowledge, it was vast. He
learned to read by reading credits, again because that is the
way he is like is only more so. That is the way we all are. The
thing that fires us, our passion, it is always our pathway. It
is not even like working. We learn to play the game in schools.
Oh, my God. I got to memorize this. When is the test, and I
forget it the next morning. These kids are never going to learn
that. They are not wired that way. Their reward circuitry
doesn't work like that. Their passions are their pathways.
So this is what we learn and then question is what do we
do. This is creating change in the community that is in a way
overdue and oddly expected. People have been talking about this
for years. There is a tipping point we are seeing now. What
does it mean in terms of what we can do? Well, what it means is
that we now have a clear pathway that Thorkil and the other
folks of this committee are seeing as well to say, yes, got it.
Exactly like us only more so and less so. All right.
How does that work? Well, the less so part is to make them
fit into systems of valuing human ability that we know are kind
of one size fits all and don't work very well. Well, what we
are doing there is measuring the less sos every day, trying to
fix that part and often ignoring the more sos. Again exactly
like us. It is the distribution that is the key. What are those
more so parts? Hard to measure and why should that surprise
you? Faith, will, adrenalin, creativity, the best stuff is
hardest to measure.
It is our yardsticks that need to be changed. That is part
of the discussion we had during the recess, all of us together.
How do we change the yardsticks? What happens when you have got
a one size fits all yardstick that some kids succeed by
managing and get that slot at Goldman Sachs or McKinsey. What
do you do when that yardstick gets gold plated, even when we
know it is bent? The mission, of common purpose in this period
is to offer a new set of yardsticks that actually reflect the
way we are in terms of the diverse character of human beings.
Is that going to be difficult? Of course. Is that something
government can help with? Absolutely. But those yardsticks are
crucial because what happens going forward?
Let me tell you what is happening right now in my crazy
little shop up at Harvard. What we are doing is we are
gathering affinities. We have folks coming to the
LifeAnimated.net Web site. The book is only out 3 months, but
there is a kind of energy, a revolutionary pop that is
occurring. We say show me that affinity in a video. So we got
the videos piling up. Every one like Owen.
Using the affinity, and one of the researchers at Yale,
which I will tell you about in a minute, says its like the
Enigma machine during World War II. They use the affinity to
crack the code of the wider world. So what does it look like?
We have got kids with all kinds of affinities showing their
stuff on the Web site. That is one side of it.
The other side of it there is a team of neuroscientists
that I am working with since the publication of the book, MIT,
Yale, Simon Baron-Cohen at Cambridge University, folks at Duke,
even some people at NIH because Tom Ensel is very psyched up
about all of this. Here is what they are doing. They are
bringing in communities of autistic spectrum kids at a young
age. They are having them walk on to their affinity, and then
they are doing the fMRI. Okay. Here he is in the sweet spot.
Let's lighten up. Well, look at that. The reward circuitry is
alight. Parts that deal with social cognition are firing.
Actually this shows in this fMRI his compensatory skills
because that is the key.
Again, you are an expert in neuroscience. You know we are
living in the era of neuroscience. What have we learned just in
the last 15 years since those terrible, terrible moments where
the epileptic kids had to have half their brain taken out, and
everyone said oh that is awful, and then they said, geez, the
remaining half is doing everything both halves used to do, how
is this working? We thought the brain was static. We thought if
it doesn't happen by the time you are 3 years old, it ain't
going to happen. We are born with more cells as a baby than any
known thing in the universe, and we shake them and discard them
until we die.
All of it wrong. We are constantly shaping our brains every
day. You guys probably shaped it this morning frankly. We are
growing cells and the brain is constantly improvising to find
new neuro pathways. This is very hopeful because what do we
find with our communities that the neuroscientists are
affirming, a traditional pathway may be blocked, stressed by
virtue of the hand they are dealt at birth. As they go out into
the world and find their affinities, compensatory strengths are
building.
It is just high school science, conservation of energy. It
goes somewhere. Where is it going? That is what the researchers
at MIT, Yale, and Cambridge are there to find out and once we
begin to discover, which is the way this is moving now, and it
is not just there, it is everywhere. Once we discover those
compensatory muscles, we will start to say fine, I can nourish
that. I can support that and that eventually is going to be
something an employer says, oh, can I have one of them.
Actually 100 of them would do.
What happens here? What happens is that we begin to tap
enlightened self interest. Look, you all know as we all know,
the only thing that works in a civil, free society in the free
enterprise model, as the founding fathers knew, is enlightened
self interest. We need to bring the enlightened here to the
self interest, and we will do it working in unison.
Researchers, government, industry, and frankly folks like
some of the folks at the panel here today who are pioneering
new ways to see ourselves through this left-behind population.
This is what always changes the arc of history, the moment
where the left-behind population is seen as not them but us.
That is where we are now.
So on the LifeAnimated.net site, we have neuroscientists
looking at the videos of extraordinary feats of these kids who
are discarded, and they are saying actually that is a neural
pathway, and that is a neurological strength, and this is
something an industry wants. That is one side of it.
Another side of it is we are setting up the affinity
network where these affinities are going to be displayed and
scaffolded, again with support, so that employers can say uh,
there it is, and that is measured good. Can we have an exchange
or conversation with that young adult. We will manage that
conversation. They are not going to be out there in the swift
winds of public without support. Again, these are things that
government might get involved with. Just like ebay or
Monster.com for special skills. The way the world works now,
two.
Three, what I am now doing in the past 1\1/2\ months is
meeting with folks out on the far and distant coast. Folks who
are building augmentative technologies and creating a
generation of augmentative technologies that will be exactly
the kind supports that this population needs. There is no place
in which the return on this investment will be greater, not
just for the folks who want to jump in and invest, but more
importantly for society at large because this is the era we are
living in.
Now, Owen sees it as a side kick. He looks at Siri. He taps
it on his iPhone. A couple months ago he says can I ask it
anything. I said what would you ask it? And he starts reeling
off what he would ask it. That helps him be context strong
where he is often context blind. That is where we are going.
This is something that is shared purpose, again not a zero sum
game, a win-win. That is happening as part of a synergistic
group of activities.
Let me just finish with this. These affinities create
community. I am a kid and looking at the folks in the panel and
all of you were kids. We are lumpy middle aged people or
better, you couldn't find folks like you. Not so easy. You
might have a club at high school, you might go to place where
they did something like the comic shop or whatever it is. Well,
now we can find each other. It is one of the great miracles of
the connected age.
What is happening is that these affinities are forming
communities and once that happens, these kids don't feel alone.
They don't feel broken. They feel strength in numbers. And they
are like we are all good at our thing. We are not less. This
part we are more and this is what happens every week at Disney
Club at my son's school. He started it when he got there 3
years ago, his college program at Cape Cod because he wanted
friends. He wanted people like him.
What is fascinating and enlivening and hopeful is that many
of the kids in Disney Club were not raised in this sort of
crazy, ionized, animated character, affinity therapy workshop
that our house became. They were raised just like most kids.
Some of them were told cut off the affinity. It didn't vanish,
and their passion did not diminish. When we get to Disney Club,
it is like a dam break. The first Disney Club they are watching
``Dumbo.'' Great movie. Of course, Cornelia and I, my wife, we
have been talking Disney for years. This is easy for us. We say
to the kids, talk to me about ``Dumbo.'' Why is this a
favorite? One of the young ladies says let me explain. This is
a young girl who could not speak as a child. Many of the non-
speaking kids bond with non-speaking characters early on that
express all emotions without words. Why is that a surprise? She
says well, you see the thing that made him different, his ears
made him an outcast, and I understand that from my own life;
but then he learned through his life that what made him
different allowed him to soar.
This is the age we are in. This is a time where we can
allow them to soar, and it will draw the best from us, not just
as individuals, but as a society to say in this time we rose to
the occasion of making the arc bent.
Thank you, Mr. Chairman.
[The prepared statement of Mr. Suskind follows:]
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Mr. Smith. Ron, thank you very much. That was an
extraordinary bit of insight and sharing a personal history of
you and your son Owen. Thank you so much for that.
You know, I think one of the bottom lines that you have
shared with us is that best practices also include the
yardstick, as you put it, how we look at and view those on the
spectrum, and that is a change that hopefully happens not just
in Washington, but across all of corporate America and then
throughout the entire world, which is one of the reasons why we
are launching this whole aging out issue.
Part of the CARES autism bill that has passed the House and
is now pending in the Senate, is to get to the point of looking
at what is available once you have aged out, housing, job
opportunities, and we are hoping in at the end, all of your
testimonies were just extraordinary. I still, and I have tried
for a long time now, can't get USAID to focus on autism. So
your testimonies will be put in writing to Dr. Shah who is a
good man, who is the Administrator for USAID. CDC does some
work overseas but not enough or any from USAID.
And your point, about the what you did, Mr. Rosanoff, in
Ghana with the Health Minister from Tanzania and the First Lady
of Ghana with 14 countries participating plus your work with
Ethiopia. I had a hearing where we had women and children and
families talk about what was available, and we had a woman from
Cote D'Ivoire who talked about how in Cote d'Ivoire there was
nothing available for her son, and she was one of the lucky
ones at the time that went to Ohio and then received the full
assistance of the state and municipality that she lived in.
So, again, your testimonies are great and I was in the
Centro Ann Sullivan del Peru and saw, I mean, while we can
share many best practices, we can also glean best practices
from others, and I thought they had much to offer in Lima. It
is a 30-year-old effort, and I was really impressed. I could
tell you were too by your statement.
I would like to yield to my colleagues. I do have a couple
questions, but I yield to Chaka Fattah.
And then go to my good friend from Pennsylvania.
Mr. Fattah. Thank you, Mr. Chairman.
The World Health Organization indicates that there are well
over 1 billion people worldwide suffering from one of some 600
brain-related diseases or disorders or challenges.
Autism is something that we have seen an increased
prevalence of worldwide, and in our own country something like
1 out of 68 children are somewhere on this spectrum. We have
got a gender situation where it is almost always a young boy,
but I could just tell you the most hopeful thing I have heard
is the testimony I just witnessed, Mr. Chairman.
And it is quite empowering. So, and Tom Ensel is someone
who I deeply respect, and I know that the Institute has been
quite focused on this issue, and I want to spend just a few
minutes on this.
I had here on the Hill last week a young lady, Renee
Gordon, whose son is an adult now and has had a whole set of
challenges. But to jump to the positive, now he has got an
iPhone that he can speak through. It hangs around his neck and
to deal with the question of affinity, she had indicated that
he knows every street in Washington, DC. You know, he can walk
you through any museum. Because he has got this capacity, this
strength, that others of us don't have in terms of this.
And it points to the work that you are doing around
affinity. It is true that where every other description you
would say that this young man was a low-functioning person, but
in these particular areas, he functions beyond anyone else in
terms of his ability. So there is something to be learned.
I spent some time at Boston University at the Autism
Excellence Center, and I was taken by the art work done by
young people, and there is so much that we can learn here and I
think you really have flipped this on its head from looking at
it in one way, to us looking at it in a much different way.
And so, Mr. Chairman, the other morning, on Tuesday I spent
the morning at DARPA, and they are doing some great work on
neuroscience, and a lot of people throughout our Government are
doing important work and I just hope that as we look at this
question about autism, that we put it in a broader context. I
think about the gender bias. We see the same circumstances with
schizophrenia. It is almost always a young male. And I am
convinced that as we look at these things, that we are going to
find solutions the broader we look and the deeper we look, and
that is why the mapping of the brain and some of the other
things that are not disease or disorder specific I think have
an import in this effort because we have some real runway room
here.
There is a lot for us to learn. We have learned a lot, but
we have to do more and we have to do it from a global
perspective. And you know, the EU's efforts, Henry Markram, the
efforts in Israel with the Israeli brain technology, all around
the world people working and that is why I am glad as chair of
the committee you have taken this on to kind of look at it from
a global context.
So I thank you, and I thank you for all of your testimony.
I read it before. We were over on the floor, so I wanted to
jump the gun before you--I didn't know you hadn't testified.
But thank you very much. Thank you.
Mr. Suskind. You have inspired me, sir. Thank you.
Mr. Smith. Mr. Meehan.
Mr. Meehan. Well thank you, Mr. Chairman.
And I think all of you inspire us as well with not only
your--your persistence. You know and I think that is the kind
of thing, I have the joy of living next to a neighbor with a
young child, and we have the joy of watching him grow, but I
have watched the parents, too and it is a remarkable thing to
see. I know it is not always easy, but working not just to
survive but to develop these into this next place is really
what I think is so special about this hearing.
Let me start first. And I am struck by, Mr. Suskind, your
talks about the affinities and the identification of places,
but Mr. Velasco, you have similarly used that same language,
and if you could talk about your experience where you discussed
the idea that so often those who have autism and have a lot of
other coping capacities and skills to bring never get through
the first interview, once they disclose something, and so they
are constantly in the same vein in which you have identified
it, seem to be ready to go and then they get knocked down by
us.
And yet here you are, taking the time to say, wait a
second. Let us find this affinity, and, in fact, you are
finding workers that in many ways are superior and that is sort
of a breakthrough if only we are able to channel this
understanding and have others begin to appreciate the
opportunity that exists and is very special.
So would you share with me your experiences, whether this
experiment has met your expectations or perhaps even exceeded
them, and I am particularly interested in how you focus on that
particular strength that you are able to develop?
Mr. Velasco. Absolutely and thank you for the opportunity
to share once more our experience with the Autism at Work
program.
George Brown is one of our new employees. George is early
40s in age, and he allowed me to share his experiences with you
and with this panel and members of the audience. Just yesterday
he sent me an email, and he said for many years I went through
the interview process only to be rejected over and over again.
I would take this skill or that skill that they asked me to
learn. I would take or acquire this certification or that
certification that they asked me to acquire to be marketable
and employable. I went through college because they told me I
needed a college degree; and at the end, he said, I was still
being rejected. I suffer, he said, from deep depression because
I continue to be rejected.
What I find in Mr. Brown is a tremendous resiliency, of
course, because he has been through this for many, many years.
I found this passion for the work he does at SAP to be
inspiring to other people. His testimony as a worker I think is
unparalleled. He is as involved as any of the other 12 new
colleagues that we have here at SAP. Does he have the
capabilities that we are looking for? Absolutely. George has a
degree in business administration with a specialization in
management of information systems. So from purely a skill
perspective, he has what we need in the organization, aligned
with the emphasis, of course, that we are seeing in his day-to-
day activities with the company.
We also have other people like Janis Oberman. Janis is 56
years old, and Janis was unemployed from the year 2000 until
2014 approximately. She has a master's degree, and she has an
undergraduate degree from the University of California at
Berkeley. She was diagnosed with autism late in her age. She is
a software tester, quality assurance in the business products
that we sell to our customers.
And what we are finding is that again the capabilities are
there, the ability is there, the desire to work is there, but
it is just that the other side of the table sometimes doesn't
have the capability to understand and harvest that talent. I
believe that as organizations start maturing and learning that
there is this pervasive skill out in the market, and as we
start seeing that there is an enormous amount of job openings
out there in science, technology, engineering, and mathematics,
that if something is not working right when you find that there
is people that are unemployed, underemployed or partially
employed who deserve a better shot.
Our expectation at SAP is that those capabilities that we
are seeing at work right now will pay off in the long term, in
the short term as well, but in the long-term in retention
practices as well as, because the cost associated for companies
like ours to replace an employee go as much as 150 percent of
the annual salary of the person being replaced. Now, if you
have an attrition rate or a turnover rate in a company of 10 to
15 percent, which is typical in many software companies,
replacement costs are a huge loss of money for the
organization. So we are seeing that not only the skill
acquisition, but also the retention of employees as something
of extreme value.
And so far what we are seeing in our employees again is
thatresiliency, that intense desire to work, to come up to work
every day and contribute as being you know, an enormous driver
and inspiration for the rest of us in the organization.
Mr. Meehan. I thank you for that commitment, and I hope
that you will, as you further unlock this secret and build the
record for these successes, that you won't be worried that your
colleagues at some of these other technology companies will
catch up with you, that you will take that information and
allow it to be shared so that others won't be afraid to explore
the possibilities and develop the potential.
And I think, Mr. Suskind, you really developed this concept
in the testimony which I found so intriguing. And I had an
experience, Garnet Valley High School in my area is working in
a very proactive way working with really two groups, which is
kind of neat. The juniors and seniors are being taught robotics
and how do the process of manufacturing and operation. The
children in the grammar school, I watched the robot, and it
sits and speaks and talks to them and the teacher said that.
You know, when I talk to them, you can see the seven
children around, and the engagement was, they knew the teacher,
they were comfortable. There was a little more action with us
in the room, but there was a sort of the management of the
orchestra that was still warming up. But when they put the
robot on, the children just came in, and they engaged in a way
that I had never seen before, and they were sort of enjoying
this concept that they are breaking through to something. Seems
to me they are on to this concept that you were discussing.
Tell me a little bit more about how we discover this in
more ways, and certainly we know about the spectrum. There is
really remarkably talented folks with a few issues, and there
are some that are really struggling, as you said, to even say a
word or tie a shoe. Do we find that same possibility on the
full spectrum?
Mr. Suskind. We do. We do. It is interesting because I
arrived at this, Congressman, with what I say the same usual
set of neurotypical prejudices and blind spots. I don't even
know what the word neurotypical means anymore. Frankly this
whole experience has helped me look at myself and people I know
with new eyes.
We are probably all, in some years hence this will be
discovered, we are probably all a mixture of many spectrums,
many bands of color in the human rainbow. We have
concentrations here and you know, less concentrations there. I
think that's the reality that we are all now seeing in some
ways for the first time.
What you are seeing now though are people recognizing that
many of the ways we measure human capacity, i.e., expressive
speech, well, it doesn't track with underlying cognition. I
know many, many kids with inabilities. We got 40 percent of the
folks on the autism spectrum have little or no speech. They
have now a new buffet, but they need more frankly here of
augmentative devices, where they type. I have a friend whose
son types 180 words a minute quite beautifully, grammatically
perfect. The kid's got real talent. He cannot talk to you. But
what he is doing is he processing the world again through his
powerful muscle, his Enigma machine, and he is breaking codes
every day.
Part of what you find though, what you are talking about,
this robot, is that what I think many of the researchers have
found, is that when there is something that is a verisimilitude
of reality but a little off to the side, which is a little bit
what this community does, they create an alternative alongside
reality that kind of works, it grabs them. It draws them in.
I mean, right now, and you can go online and see this,
someone I know up at MIT, Cynthia Breazeal, who is the robotics
chief up the MIT has created this robot, Jibo. And this thing
is a desktop robot that does very much what you are talking
about, and it is quite enlivening. And you can see how it draws
in neurotypical people, but for the spectrum community, this
could be a pathway to joy.
I mean for instance, I can see Owen. Owen and I watched
Cynthia's video not too long ago, and he is like, wow, so I
could have the robot do all kinds of stuff. I said yeah. I
could have it play a video? Uh-huh. And I could talk to it?
Well, we can't do that. That is another company, ToyTalk where
you can talk to the video and it talks back. I mean this is
where we are going. We are all becoming kind of a version of
Cyborg here. We are all augmented by a new generation of
technologies.
And what is interesting is that it goes not just to this
community but how this community is a canary in the coal mine
showing us ourselves more clearly as to what the future might
look like. This is where enlightened self interest gets
involved. You know, in some ways they are the R&D lab for what
will be working for the rest of us. It is not just the app
we're building. Everyone is going to want the app because,
look, I can use that, too. Developing context as I walk through
the world. It is more than that.
It is that the neuroscientists, as the Congressman
understands, and anyone who deals with neuroscience is that
Eric Kandel says it best. Understanding autism means we will
understand the human brain. Why? Because it is odd and
fascinating in the way it opens a window to seeing the brain in
its more so and less so concentrations. So that means not just
the areas that are challenged. That means neuroscientists
saying look at the more so parts. Can my brain do that? That is
where we see possible futures, where this community will start
to lead. This is the sweet spot.
And, part of what we could do together is to support the
programs that alter perspectives and the framing of the debate.
I mean, once that happens, much of this will carry itself
forward, but that is kind of where we are right now. It is to
say how can I help people see what the underlying science shows
and what many people on the panel here know from long, hard-
earned experience.
Once that happens, this room grows. This table multiplies,
and people start saying this is not about them, because they
are us. This is about how through them, we all move forward and
we are all better off. That is where a change occurs.
Mr. Meehan. Mr. Chairman, thank you for the courtesy of
being able to be with you here with you today, and I really
want to thank the panel for their tremendous and uplifting
testimony.
I am inspired and I am very grateful for the work that the
constituent company has been doing at SAP. I look forward to
continuing to work with you on these possibilities.
I have a thing I am late for, but I thank you for the
chance to participate.
Mr. Smith. I will just ask a few final questions, and again
your testimonies will be disseminated very widely as soon as we
get the full record together, so thank you for that.
And, your points have been brilliant. I think you have
focused on different things. I think the idea of looking at
this you know, from a way we have not done before is greatly
required to move forward and to make advancements. Talking
about enlightened self interest, how do we go about getting the
CEOs, the hiring specialists in companies, to really recognize,
you know, the jewel that awaits them if they hire a person on
the spectrum?
Mr. Velasco. Congressman Meehan had a really good point,
and that was precisely in that direction. How do we make it
happen? And I think that sharing is a key element of that.
What we have done at SAP is we have opened up a number of
venues for other employees to come and visit with us. We share
what we have the minute that we have it available, so as soon
as we are wrapping up our pilot programs, we are in a position
to share our learnings. We have had up to now approximately 15
companies who have approached us, very large companies, very
committed companies. One of them just told us last week that
they had received final approval for their own Autism at Work
program.
Mr. Smith. Are you at liberty to say who they are?
Mr. Velasco. Yes. The name is Capital One.
Mr. Smith. Thank you.
Mr. Velasco. Thank you.
Mr. Smith. You know, if I could, while you are answering
that question, maybe you could elaborate, too, a little bit
being from Denmark and with your European background, on how
the Europeans are doing on this.
And another question for you all, and Ms. Hussman, you
might to want to touch on this as well. If 50,000 autistic
American children are matriculating into adulthood every year,
what are the numbers around the world? Are they along the same
demographic, or has it lagged or what in other parts of the
world, and how many do we see, you know, of the 70 million, how
many of those are becoming adults?
Mr. Sonne. Well, I have 10 years of experience from Denmark
and we still have employees with autism working at the first
couple of clients we have in Denmark, so it says something
about retention and resilience.
And what I experience here in the U.S. is that there is
huge interest in focusing on talents here. I relocated to
Delaware because Governor Markell said, I will get the
stakeholders together. We have a lot of high tech jobs that are
vacant and we have more and more people being diagnosed. So he
chaired the meetings and showed political leadership that now
has resulted in Delaware being our base for the U.S. What it
takes is for the corporate sector to really request these
people, because we have to turn from a push to a pull.
We have to have companies like SAP doing the storytelling,
but Specialisterne is also a case study at Harvard business
school because we manage what they call the outliers, and they
claim that the winners in a global knowledge-based market
economy will be the companies who are at best at managing
outliers because the edge is where innovation comes from.
And in the latest issue of MIT Sloan Management Review,
there is a story about the dandelion philosophy of how to see
always the herb angle instead of the weed angle so you see a
dandelion, and this is also what we have been discussing here
today. Instead of looking at the deficits, let's park that, and
let's see the strengths.
I think that time is on our side because there are so many
vacant jobs in this STEM sector, in the high tech sector, and
thanks to stories from companies like SAP, we can get the
companies to really say, wow, we missed something here. Let's
follow the SAP example. But there are also many with autism who
do not qualify for the high tech jobs. But then there is the
503, the new rule saying that 7 percent of people with
disabilities should be working for you if you want Federal
tasks.
So that can really broaden the spectrum, not just for the
high end part of the spectrum, but we can really have the
opportunity to make Janis and George show the way, open the
doors from the companies and then get as much talent in play
among people with autism and similar challenges. There are many
others who have challenges similar to autism, and we have to
remember them, and hopefully we can get people with autism to
open the door for people who have other challenges but have a
lot of talent and capacity if the employers will accommodate
for that.
And I really follow Ron's example of the canary in the mine
shaft, because I claim that a workplace where our people thrive
will be a good place to work for everyone.
Mr. Smith. Ms. Hussman, I thought your testimony was
excellent, but your point that the lack of our Nation's
attention to fully integrate those living with autism into
mainstream society, and you make a very important point which
was created frankly by the ADA. Through universal access is
often expected of buildings and stairways, our society has yet
to build universal accesses into schools curricula, workplaces,
our hearts, or our minds. If you can again answer the original
question, but I think that point was very well taken.
Ms. Hussman. Yes. So one of my concerns in the dialogue
here, or my experience in the dialogue here, is Mr. Suskind
gave the percentage of 40 percentage are non-verbal or
partially verbal, and so when we talk about the high skill
jobs, we need to be coming at this from both--actually the
logistics of the table works out well, from both ends.
What you will notice in many of the stories is that it took
time, patience and support from many of the positive stories
that you are hearing, and a lot of hours of a lot of parents
and what we need is to shift that, not just from the parents,
but to society as a whole when we talk about changing our minds
and making the ADA bigger than our stairways and our doorways,
is to say that our teachers, you have to pick special ed to get
any training on autism or anything else. But I would defy you
to walk into any American classroom today and not find someone
with a learning disability, someone on the spectrum, somebody
who needs different supports.
So our curricula for our teachers alone could significantly
change the landscape of people's perceptions when somebody
comes to you for a job or somebody comes to you for some other
opportunity or tries out for a team. So I am not sure that I
answered your question but----
Mr. Smith. Before you go, the worldwide demographic, again
moving into the adulthood stage, is it pretty much universal
around the globe, or is it just----
Mr. Rosanoff. So, Mr. Congressman, I can offer some comment
there about numbers. Really the 50,000 children transitioning
to adulthood each year is a number that is derived from the
U.S. prevalence estimate of about 1 percent. We need to keep in
mind that that prevalence estimate is among children. Our best
estimates of prevalence around the world are about the same,
around 1 percent, so yes, we can think about it in terms of
similar numbers. I can tell you from you know, experience in
meeting with families around the world that this aging out
issue, this transition to adulthood issue, is a major one and
one that is on many people's minds.
But the point I want to come back to and I think the
important point we shouldn't forget is that we really don't
know how many adults there are with autism in the United States
and around the world. Again the prevalence estimates are based
on children. We have an estimate that about 1 percent of adults
have autism and if that's the case, then there are more adults
today with autism than children with autism. But I think it is
important to remember that many of these adults may not have
formal diagnoses. They may be in different sectors of society.
Some may be comfortable and contributing to society but with
challenges that I think could benefit from more attention given
to these individuals.
We need to, I think, keep that in mind. When structuring
these programs, an individual may not necessarily have to have
the diagnosis with the consideration that they may have autism
and just may not have a diagnosis yet. So improving our ability
to identify adults with autism will help us better help them
overcome their challenges and again find those opportunities to
contribute to society.
Mr. Smith. Briefly, in your testimony you talked about 14
African nations that you were a part of and the First Lady of
Ghana and the Health Minister of Tanzania. What has come of
that? Did they come up with an action plan? Was there a follow-
up to it?
Mr. Rosanoff. This was really a first of its kind type of
meeting where the idea was to bring together advocates and
various stakeholders from African countries, to share their
experiences. This was an opportunity to demonstrate that there
are similar challenges across countries, and even though there
may be differences in culture and resources, there are common
challenges that then allow for common opportunities to work
together to collaborate and to develop these types of
solutions.
So really this was a first chance for various groups around
the African continent to come together and think about an
African autism network where the idea would be to develop
strategies to raise awareness of autism across the continent
but also build capacity for services and research.
Mr. Smith. Mr. Sonne, you had mentioned autism in Africa in
your testimony and mentioned Nigeria has one adult psychiatrist
serving the needs over 1 million people and the
disproportionality of specialists and professionals to the
number of people who are affected. I am working on a case now
with CURE where they are trying to help children with
hydrocephalus, especially those who get it from an infection
base, and they have cured 5,000 kids in Uganda through a simple
non-shunt related, no shunts are needed, and I went there and
watched it. So did Greg and we actually one of the trained
neurosurgeons come over and testified. He did it by Skype, so
we saw him over there, and the idea is to build out a capacity
of 100 neurosurgeons over time.
We were also trying to get USAID to focus on that and thus
far have failed miserably. But that said, it seems to be there
is a similar type of lack of capacity and if you don't have the
skilled personnel you could have absolutely committed parents,
but they also need that specialist's insight and diagnosis in
the first place. What are your thoughts on that?
Mr. Sonne. Well I think, it is a matter of making the pull
from the companies in Nigeria and other African countries, then
I am sure that companies like SAP, they know what they are
looking for and as we discussed, there are many adults with
autism, probably the majority, who do not have a diagnosis but
have the same traits and have the same talents that the
companies are looking for.
And I think when companies have learned from our
experiences and SAP's leadership here, they will create
environments where people with autism thrive, but also people
who are not diagnosed with autism will thrive and I think that
will be a magnet. I think it will be known in the community.
Well, you will know if you have challenges in social
interactions and teamwork, but you are really good at math,
physics, IT, chess player, type, so you would know that SAP,
for example, would be a good place to go for you to work.
My ultimate goal is really where we can take autism out of
our equation and say this is not just about autism. This is
about good management, and this is about giving companies
access to talent and to help the companies find that talent and
describe the shape it comes in.
And many will have a diagnosis. Many will not. But I think
if the needs, if the pull is there from the companies, if we
can apparently empower the society and the families to learn
social entrepreneurship, work with stakeholders, then you will
not need an autism diagnosis in order to get in to thrive in
program like at SAP.
Mr. Smith. Let me just ask maybe SAP or either you could
answer this or anyone. A large number of people get jobs first
as interns. My legislative director, Cate Benedetti, just
walked in. She first started as an intern. We got to know her,
got to see her work product. Then Mary Noonan, our chief of
staff, decided to hire her. Is there any kind of consideration
given to SAP or in this model that would bring in some of the
students before they cross over to adulthood?
Mr. Velasco. This is an incredibly important topic. The
issue of transitions, and transitions happen all the way from
high school to college, and for those who go through college to
professional life. One of the things that we see is that people
in the spectrum after they graduate from college, the ones that
are able to finish, a junior college or a college degree,
oftentimes drop and they have a 2- or 3-year cliff you know,
where they are unemployed, and this is where they start asking
themselves why can't I find a position, a job. There is
something wrong with me. Right.
So it impacts people quite a bit. What we are doing right
now is exploring the possibility of an internship platform at
the company, allowing people to come in, in the junior year.
This is still on the design phase, but it is something that we
have our eyes set on. We believe we need to capture talent
early on before they graduate, people with a degree, sort of
education that we are looking for, and the idea is that we will
introduce this process hopefully within next year.
Mr. Sonne. Yes, what we are doing right now is we are
working with this assessment, training and on boarding model.
We are building bridges between people with autism and
companies like SAP. But we want to remove the divide, and we
can do that if we can work with the education system and the
companies to have more crossover, to have the role models from
the companies being involved in the school system and to have
the students in internships.
We have a youth education in Denmark where we do a lot of
that. They are in internships at our corporate partners. We
teach life skills as well because this is more important than
what we are doing now. If we can work with the education
system, we will hopefully be able to remove the divide and
inspire by new way of seeking talents and to teach the
companies new ways of management. Then we can remove the divide
that is there today.
Mr. Smith. Mr. Suskind, final word.
Mr. Suskind. It is interesting. You talk about these models
of in a way exposure. There is lots of suspicion and confusion,
and then they sit with the spectrum kid, the young adult, and
they are like, huh, not what I thought. That is what the
internship platforms are doing. You guys are leading that
charge. That is something that should be happening everywhere.
Every kid these days starts with an internship. No one is
getting paid before they are 24. So that is an opportunity for
these kids to not be different also being interns. That is one
thing.
The second thing that I felt was interesting a minute ago
when you were talking about models that work in Africa, is that
I am an old enough guy that I remember talk of the new
Federalism back when, that states would be labs for programs,
and the Federal Government would pass it to the states to
figure out what works best. Well, now we are in a global
experimental model that countries that lead here will be
demonstration models for what works, and you may find a
surprise as to some countries that you would not expect to be
leading that take the lead.
I consider this when I think of incentives which is much of
what we talked about today, a kind of incentive for a country
maybe in Africa who gets put way down the list of possibility,
says we have been able to shape something that can be used as a
model for others. You know, a big challenge here that we have
talked about in a different way all day, is something that I
deal with at Harvard when I talk about narrative. It is about
reframing the narrative. We all make sense of our world and
ourselves through stories. Our kids, of course, do it very
dramatically.
And we talk about a lot of the math science kids that, of
course, you guys have embraced. I am spending time with TED
talks for the humanities types, lots of kids who work and live
inside of stories and develop stories. Well, they get this,
they get this in ways that even we don't. That is a big part of
what is so positive about this. Again, extreme versions of us
that often reveal our capacities back to ourselves. That is a
golden point here and in this case, they make sense of their
life and their world through story.
And the story here is reshaping, but it needs to be
reshaped with a kind of solidity of purpose to give the
employers the yardsticks, the tools they need, so they have no
excuse. I have got the data now, okay, I have got this
yardstick which measures this array, this buffet of
compensatory skills. Now I have no excuse and in fact, I now
have what you talked about, Thorkil, before; I have comfort in
my corporate thinking where I want to reduce risk and I want to
optimize potential and profit. That is the way companies think.
Well, when they get those yardsticks to show capacity,
again in this wide range, this arc of many types of
intelligence, it gives them comfort on the risk side. It also
gives them hope on the profit side. That is the only thing that
will work here, and part of what we can do here is give them
the tools, the supports, so that those corporate decisions will
be the decisions that ultimately carry forward, not just the
individual good, but the wider self interest of society, and I
think it is within reach.
Ms. Hussman. Chairman, if I could, back on the numbers in
other countries, we are in two cases, we have some schools in
Asia, in Thailand and Burma, and we also have a grant with the
Carter Center in Liberia where they are specifically addressing
mental health as an umbrella and the approach is to educate,
the further out you get from urban areas, it is just that. It
is just an umbrella of mental health. If you have epilepsy,
they believe you are mentally ill, and you will be chained
until you work through your seizures.
And so when we talk about the numbers, I think that until
we get to a place of education, that there are specific
disorders underneath of it, and in Asia we are finding,
actually we sent our son, and there too, you have found that it
is just, in the society that is so tough just to get through
the day, that there is just a label of a mental disorder and
our son was able to say no, I think he has autism, because he
is familiar with it.
And if I could just make one other point for the day is
that when we talk about the 40 percent non-verbal, when we talk
about the progress and the skills, that it is not always just
an economic benefit that these kids bring to our society.
And so, that is the whole spectrum that we are talking
about, that sometimes just bringing a society's ability to
recognize the value in ourselves at a better level, it has got
some economic benefit to it as well, even if they are not----
Mr. Suskind. Creates a more humane civilization, doesn't
it?
Ms. Hussman. Yes. Yes.
Mr. Smith. Beautifully put.
Unfortunately there is a vote on and it is at zero, so I am
going to have to dart off.
Thank you so much. This is part a of series. We have had
other hearings on global autism, but this one has a very
specific focus on the aging out issue.
And all of your testimonies were extraordinary and I think
will enlighten the Congress. It certainly enlightened me. Thank
you.
[Whereupon, at 5:17 p.m., the subcommittee was adjourned.]
A P P E N D I X
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