Corporate Leaders In Education:
Interview with Suzanne Wright:
Education Leader & Passionate Advocate
By Pola Rosen, Ed.D.
Education
Update (EU): With regard to your education what are some
of the challenges you’ve faced and how have
you met them?
Suzanne Wright (SW): The biggest challenge I’ve ever
faced is when my then-2-year-old grandson—our first grandchild—was
diagnosed with autism in March 2004. There is no way to describe
how utterly devastating it was to discover that Christian had
developed a mysterious neurological disorder with no known
cause or cure. We watched helplessly as this delightful, apparently
normal little boy began to lose his ability to interact with
the outside world. For our entire family, it has been heartbreaking.
What
made it even more challenging was discovering how many of our
questions had no good answers. Which therapies should our grandson
have? Which work best? Where do we go for help? Because of
the dearth of long-range clinical studies on autism, there
are no standard treatment protocols. Our family—just
like every family in this situation---was left to figure things
out for ourselves. We assembled a team of specialists on our
own, willing to try anything that might help. Unlike many other
families struggling with autism, though, we were fortunate
that we didn’t have to sell our house or take on a huge
burden of debt to pay for treatment. The costs can be staggering.
During
our struggles to help our grandson, we felt hopeless. There
seemed to be nothing we could do. But we couldn’t
give up. We finally realized that there was something we could
do. We decided to launch Autism Speaks in order to make a difference
for our grandson and for the more than 1.5 million individuals
in the U.S. suffering from autism. Autism Speaks was launched
in February 2005, thanks to the overwhelming response from
the autism community and friends like Phil Geier, Mel Karmazin,
and especially Bernie Marcus, who donated $25 million to get
us up and running. So what began as private heartbreak has
become a very public and heartfelt mission.
This experience
has been, and continues to be, the greatest challenge of our
lives, both personally as we witness our loved ones struggle
with autism on a daily basis, and publicly as we work to
find some answers. Through Autism Speaks, we are raising
funds for vital biomedical research, promoting awareness
about autism, and supporting education programs for children
with autism. We’re not going to stop until we have conquered
autism—one child, one voice at a time.
EU: Who were some
of your mentors?
SW:I don’t have any traditional mentors but
I’ll
say that my husband is the person I admire more than anyone
in the world, and he has been incredibly supportive of everything
I have tried to accomplish in my life, most especially with
our efforts to found Autism Speaks and make it a significant
force for positive change in the autism community.
EU: Are there
any memorable teachers or school anecdotes that you would
like to share with our readers?
SW: I
decided to go to college after my youngest child was out of
the house. It’s something I always dreamed of
doing —but I had no idea it would be so challenging.
I spent many a night practically in tears at the kitchen table
trying to write my term papers. It’s one of the most
rewarding accomplishments of my life and I wouldn’t trade
that experience for anything. Bob was absolutely wonderful
through the whole process, always encouraging me and making
me believe that I could do it. And believe me, there were times
when I sat in the classroom surrounded by 20-year-olds and
wondered what I was trying to prove. But I’m grateful
for the experience...and the diploma. No one can take that
away from me.
EU: Your website reaches
parents and professionals. How do you plan to increase the
numbers of visitors to the site?
SW: Our new website is designed
for two different types of users; those who want to become
informed about autism and those who want to get involved with
Autism Speaks. Our “be
informed” track takes users through the information they
need if they have a newly diagnosed family member, providing
information about therapy options, treatments and legal rights.
Of particular interest in our “be informed” area
is a new special feature called “expert find” that
enables users to input their zip code and be provided with
a list of autism service providers and medical professionals
in their area. Our “be involved” track provides
users with the opportunity to get involved in our many Autism
Speaks fundraising events and to make secure online donations.
We also have a news section that is updated several times a
day with the latest news from the autism world, including scientific
research studies, articles from around the globe, lectures
and seminars, and news regarding autism legislation. And our
popular ”In Our Own Words” column allows our users
to share their personal stories with our community. By being
a comprehensive site with new material every day we believe
we will become the number one Internet portal for the autism
community.
EU: Are there any
plans for increasing research?
SW: Our
primary goal at Autism Speaks is to raise money to support
autism research. We have just released an RFP soliciting
grant proposals of up to $100,000. In particular, we are
targeting established scientists at major universities who
have not worked in the autism field. Our goal is to attract
the best and brightest minds to autism research.
EU: Are there any plans to
increase the number of public and private school programs for
autistic children?
SW: As the number of children diagnosed with
autism grows, the demand for schools and services also increases.
In the past few years there has been growth in the number of
programs and treatment providers for people with autism, but
not nearly enough to support the huge and growing population
of autistic individuals. It is also important for us to work
with state and local agencies to ensure that parents and adults
with autism are able to get medical reimbursement for autism
treatments and therapies. Autism is a medical diagnosis and
yet most therapies and treatments are still not covered by
medical insurance.
EU: How can we build a national organization and build legislative
awareness?
SW: Autism Speaks seeks to be a strong unifying voice for
autism awareness and legislation. We are working with the Ad
Council to create a major new public service campaign that
will create national awareness of developmental milestones
and of the importance of early diagnosis and early intervention.
In addition, Autism Speaks has taken a leadership role in supporting
the Combating Autism Act of 2005, currently pending before
Congress, which calls for more than doubling federal funding
for autism research. The bill would also create screening programs
and early intervention standards in all 50 states.#
