| |
|
Article ReprintSuzanne Wright Takes on Autism: An Interview with Suzanne Wright of Autism Speaks
Diane Twachtman-Cullen, Ph.D.
Part One of a Two-Part Interview
DTC: It's really difficult to believe that
Autism Speaks was launched just under
a year and a half ago. You've done so
much in such a short time. To what do
you attribute your success?
SW: It's my life's work now. When our
grandson was diagnosed with autism,
Bob said we're going to run Autism
Speaks like a business. It's very serious
what's happened here. We have to raise
$100 million a year. That's what it's going
to take.
We've had two major mergers, which Bob
and our new president, Mark Roithmayr,
orchestrated. First we merged with ACRE
based in Westchester, NY, and then with
NAAR [See the Spring 2006 issue of ASQ
for information on the Autism Speaks–
NAAR merger.] So, we have one strong,
united voice. We now have just over 70
employees based throughout the country -
from our New York City headquarters to
offices in Westchester, NY, and Princeton,
NJ, to regional field offices and affiliates in
Canada and London. And in our first 18
months, we have been able to raise more
than $40 million to support awareness
campaigns and autism research.
DTC: Wow! That's absolutely wonderful.
SW: It is. That's what it's going to take. I
keep telling everyone that we need to do
what the country did for AIDS, and get
a national agenda going. These are our
children! AIDS had a difficult time in the
beginning, until it started affecting the
general population - the mothers and
the children. Here we have children being
diagnosed with autism at a rate of three
an hour, 67 a day! It should be relatively
easy to get the attention of the country.
DTC: Absolutely. You're making
tremendous headway. You must be thrilled
with the passage by the HELP committee
of the Combating Autism Act.
SW: We have worked very hard on
this - Bob and I, Deidre Imus, my
daughter Katie, and so many others in
the autism community have been down
in Washington, D.C. talking to all of the
senators. We were down there lobbying.
This is an epidemic, and they know how
serious it is. The autism community is so
committed to this and we really came
together. As you know, since you've
been involved with autism for so many
years, the autism community can be a very disjointed group. You might have
your agenda and it might be worthwhile,
but if you don't have one voice, nobody's
going to pay attention to you.
DTC: I certainly agree with that.
SW: There are so many issues - research,
genetics, the environment. We can't let the
Senate and the full Congress point at us and
say we are not together, because then we will
not have a voice to get their attention.
DTC: That's so true. I was at the Autism
Society of America National Conference
during the passage of the legislation.
Everyone was energized and very, very
excited about it.
SW: Yes, but we still have a long road
ahead of us. We have to keep their feet
to the fire. I pity the poor person who
might vote against this. I can't imagine
anyone who would do that. But we've
still got to keep our fingers crossed
because you never know what's going to
happen. We're not there yet, but we're
getting close.
DTC: That's really encouraging. Let me
shift gears here. I understand that one of
the things that you are most committed
to is working on behalf of families. Can
you share a little bit about that work
with our readers?
SW: Well, you know when this happened
to my family, I was so shocked - first of
all that no one was talking about autism,
and second of all, that even with all of my
resources and the ability I had to get help
for my grandson, it was still so difficult.
I couldn't believe it. And then to find out
that the community had no voice - no
wonder there's an 80% divorce rate! This
is one of the worst things that can happen
to a family - the financial cost, the
emotional costs, the exhaustion of day-to-day life with autism is overwhelming.
How many people have the resources to
deal with this?
DTC: Not very many.
SW: So, we have to get services for these
people across the country, and we have
to get insurance reimbursement. I mean
it's absolutely an outrage that they don't
pay for some of this stuff. How do people
afford it?!
Autism affects not only the immediate
family, but everybody else, as well. You
know, I grieve for my daughter, for my
grandson, and for his brother, because
there's not a day in that household
when ten people aren't coming in and
out - between speech therapists and
other therapists and that kind of thing.
I mean, your whole life has changed.
DTC: You've hit on one of the areas I
wanted to discuss. John Shestack of
CAN said that grandparents really
grieve twice, but actually when there
are siblings involved, it's even more
than that.
SW: Oh, yeah. And you know, we have to
be careful of Christian's younger brother
picking up on behaviors. Christian will
be five next month, and his brother
who is three emulates him. We have to
tell him that when he wants something
he doesn't have to scream. Even potty
training is difficult because he sees that
his brother isn't potty trained.
DTC: Oh, yes. There are ripple effects
everywhere. That brings me to another
subject - the absolutely compelling film
Autism Every Day.
SW: Wasn't that wonderful!
DTC: That was just unbelievable. I've
been involved in autism for many, many
years. That one is a real tearjerker, but
it's not maudlin. It's exquisitely done,
moving, and very real.
SW: Yes, yes. We did that with producer
Lauren Watkins. She has a child on the
spectrum. She was an anchor at CNN.
When we talked to her we said we really
want to show autism like it is. And, my
daughter Katie volunteered, and all of
those moms. It is a great film.
DTC: I actually knew one of the moms.
Her three boys were on the cover of ASQ
a few months ago.
SW: I saw that.
DTC: At the time, I didn't realize that one of the other moms was your daughter, Katie. Then later, I met Alison
Singer [Senior Vice President of Autism
Speaks] who was also in it. The film
ought to be out there before everyone's
eyes, particularly diagnosticians'.
SW: Yes. Our pediatrician missed the
whole thing. And we lost six months
because we were told that since Katie and
her husband had just moved and also
had just had a newborn baby, Christian's
speech had probably regressed because
boys did that! I say in this day of the
autism epidemic, that's all nonsense!
Pediatricians have to be educated. As
part of our awareness efforts, we are
working with the CDC to reach the
doctors and the care providers.
DTC: What you say is particularly
important given how crucial early intervention
is.
SW: Listen, moms know. We had
suspected that there was something
wrong. You don't want to believe it, but
if you have an inkling - act on it. I don't
know if you know this, but Kellogg's
has joined our crusade and last week
they shipped out five million boxes of
Rice Krispies across the country, with
our "Learn the Signs" information on
the side panel - I'm looking at a box
right now - it's our [Autism Speaks']
message.
DTC: Wow. I wasn't aware of that. That's
wonderful.
SW: Yes. Five million boxes! We went to
the CEO and actually Kellogg's thought
it [the number of children with autism]
was incredible - much like when the Ad
Council accepted our campaign. They
were shocked by the numbers, too.
DTC: Actually, I was going to ask you
about that. I am very proud to say that
ASQ has a full-page ad on behalf of the
Autism Speaks Ad Council campaign
in the current issue. [See page 51]
SW: That's a huge campaign. They're
projecting $27 million in donated media
this year. It's airing on television and
radio stations across the country, on the
Internet, and in print. When we went to
the Ad Council with the numbers about
autism, they literally couldn't believe it.
And, if you know the history of the Ad
Council - they're about 70 years old;
there's Smokey the Bear and Drinking
and Driving - they don't usually take
on single disorders. They've only taken
on one and that was AIDS. Now we're
working on next year's campaign. We
have a three-year commitment from
the Ad Council.
DTC: Is this totally an Autism Speaks
initiative, or are you working with
other groups?
SW: This is an Autism Speaks
initiative, as part of our commitment
to awareness, which we all know, drives
funding, which drives research.
DTC: I think it's amazing that with
your busy schedule you still manage to
find time to stay very much involved in
Christian's life.
SW: Oh, yes. I'll be seeing Christian
and his brother tomorrow. I'm always
there. That's the beauty of having them
in the city now. I can be there for them
any time they need me.
DTC: As you know this is our very
special grandparents' issue. If you
had one bit of advice to give to grandparents,
what would it be?
SW: First and foremost, if you suspect
something, don't be afraid to bring it
up to your child. I think that sometimes
grandparents are almost afraid to say
anything if they think something may
be wrong. Take your son or daughter
aside and say there's something going
on here. In this day of the autism
epidemic, let's be safe here. Let's get
another opinion. And if they get mad,
so what, better safe than sorry.
DTC: That's very good advice. And, as
they say in TV news, we'll have to leave
it there for the moment. We'll pick up
on this in the Winter issue of ASQ. In
the meantime, thank you so very much
for giving so generously of your time
today, and for doing all that you do, not
only for your own grandson, but for the
sons, daughters, and grandchildren of
so many others.
SW: Thank you, Diane.
Editor's Note: Part two of our in-depth
interview with Suzanne Wright will appear
in the Winter 2006 issue of ASQ. For more
information about Autism Speaks log onto
www.autismspeaks.org.
Subscribers get articles like this in each and every issue return to table of contents
Autism Spectrum Quarterly
|
