[House Hearing, 113 Congress]
[From the U.S. Government Publishing Office]







                     THE GLOBAL CHALLENGE OF AUTISM

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

                                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

                               __________

        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
                                 ------                                

    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

                              ----------                              
                                                                   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

                              ----------                              


                        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.]
                                     

                                     

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