From left, Bob and Suzanne Wright with Tom Colicchio at the Autism Speaks to Wall Street: Second Annual Celebrity Chef Gala at Cipriani in New York on Oct. 1, 2008. The event raised more than $848,000 for the autism foundation.
[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Philanthropist wages fight to cure autism
Nov. 12, 2009, 10:32 AM PST / Source: NBC News
Q: Can you tell me about the work of Autism Speaks?
Wright: Autism Speaks is now the largest autism science and advocacy organization in the country, and I think in the world. It’s really a voice for the millions who are impacted by autism. When Bob and I got this, it was horrifying to me to find out that here Bob was running a major media company and we had no idea how bad this thing was. So that’s when we set out on our mission to have a big tent. We decided to form Autism Speaks, because there were several organizations in the country that were representatives for autism families, one on the East Coast, one on the West Coast, and they were very divided in their feelings about what was the cause and how they were going to go about getting an effective voice. They were very effective, but they took it as far as they could.
Bob is very good at M&A [mergers and acquisitions] so we decided that we needed to merge with these organizations, and become one very strong, powerful voice for autism. That was really our first point, when we did the mergers and when we got all the people together. Now we have more than 200 people that work for us. We wanted to drive awareness, because there was no awareness here, and awareness drives the fundraising, which in turn drives research. Then we get the provisions and the services in getting the public view, which is really the first and most important thing. I think you can see the stuff we have with the Ad Council coming up with $200 million in donated media; that was very instrumental in gaining that kind of access to all media outlets, through the Ad Council.
Q: As founder of Autism Speaks with your husband, Bob Wright, what are your duties within the organization?
Wright: I think about everything! We don’t have those kinds of rules and regulations that Bob is used to from being a corporate CEO. I get to the events mainly, I try to get to the events and get as much involved as I can in the walks, and the lobbying in Washington, so I think the two of us do as much as we can. There is no delineation of power here. It’s just do as much as we can as fast as we can.
Q: Can you tell me about the event, “Autism Speaks to Wall Street: Third Annual Celebrity Chef Gala?”
Wright: This is great. This is our third event, and it’s amazing because Duncan Niederauer, who wears our pin on the [New York] Stock Exchange all the time — he’s the chairman of the Stock Exchange — he has a son with Asperger’s, and he’s committed to us 110 percent. From the time we started now, it’s almost over $3 million. Right now, we’re coming up on a million, which is amazing in these kinds of economic times.
Then there’s a fellow named Franklin Becker, who has a son with autism, who’s a chef here in the city, and he just went around to all his chef friends around the city and the country and was able to gather them to come and support this, which is really extraordinary, because when I met them last year, I couldn’t believe how many of them have children with autism or know kids with autism. They’re totally dedicated to us.
We have some really distinguished chefs. Tom Colicchio, Robert Wiley, Terrance Brennan just to name a few. There’ll be over 80. That’s really wonderful. We’re sold out, totally sold out. We have a chef at each table and he cooks right there in front of you. It’s really quite a wonderful event.
Q: Is this something you’re going to be doing for years to come?
Wright: Hopefully until we eradicate autism. Once we finish autism, then we’re not doing this anymore. We’re sold out [for the Third Annual Celebrity Chef Gala], but they can always still send donations if they want to.
Q: What can people do to get involved with Autism Speaks, increasing the awareness of autism and advocating for individuals with autism?
Wright: One of the most effective ways we do this is our walks across the country. We have over 80 walks. To give you an example, Marci Ingram — who’s our walk chairperson, she only started this a year ago, her son is affected, and he’s older, but she never got involved and she saw our awareness campaign and just decided she really wanted to get involved — she had over 15,000 people walking this past weekend. I think we’re up to 520,000 and still counting. I think walking is probably the best thing that I do with my grandson, because we can all take a walk with our children. Many of them, I can’t take them to a restaurant, I can’t take them to a movie, or something like that, but we can all take a walk. So the walks are a wonderful grassroots way that we can get out there and give awareness to every city in the country.
Q: What is the most memorable, moving moment you had while working for Autism Speaks?
Wright: On Dec. 18, 2007, Bob and I went to the General Assembly of the United Nations. I worked very hard with the state of Qatar and the Arab League. They co-sponsored a World Autism Awareness Day resolution that I asked them to do for us, because in the history of the United Nations, they’ve only done this for World AIDS Day and World Diabetes Day. I said, well we’ve got a world epidemic, why can’t we do it? I had just been to Qatar and Her Highness Sheikha Mozah couldn’t believe what was happening in her country. I said to her it’s happening in my country, we’re looking at the same children, all these autistic children. So she was a great sponsor at that end, but I thought there were high odds of not getting this done.
On Dec. 18, the gavel came down, and there was not one objection for the World Autism Awareness Day Health Resolution. That was a really big factor. When you have the U.N. sanction it, it means a lot. They don’t agree on a lot of stuff, but they certainly agreed on that. To think that this little boy, Christian, my grandson, was changing not only how people look at autism in our country but now in the world.
Q: Can you tell me about your own experience with autism?
Wright: It’s a terrible, horrible thing. I just can’t believe how, as I said before, Bob was running NBC Universal and I go to the news people and I say, “Do you know what this is now? One in 166?” Now it’s one in 100. The numbers have just been revised, actually it’s one in 91. I just couldn’t believe that. I thought of myself as a pretty informed person. How did I not know that this was taking over a whole generation of kids?
I was angry. Five doctors in the wealthiest county in this country told me that I would be a terrible grandmother, as he was losing his speech, as he was losing his potty training, a new baby was born. So they said, “You know what, when a baby is born, boys regress” — this in the day of the autism epidemic! The American Academy of Pediatrics, I think there’s 80,000 pediatricians across the country, they didn’t even know what autism was. That was my biggest disappointment. I said, “You guys at the American Academy of Pediatrics, hello, we’ve got something going on, and my little boy is coming in here, he stopped speaking, he’s slapping, he’s not toilet-training anymore, and you’re telling me boys will do this. I don’t think so.”
So, now as a result of me screaming and yelling — excuse me, but that’s what you had to do to get their attention — now every child is mandated by the American Academy of Pediatrics to be screened for autism at 18 and 24 months. This is the second year coming up in May. That was something that was really amazing that happened that quickly.
Q: Is there anything else you would like to add?
Wright: The World Focus on Autism Day that I just had, I had a breakfast at the United Nations, when they opened up the United Nations; I had 19 first ladies of the world show up. Ban Ki-moon’s wife, she was my chair, and Meredith Vieira was my moderator. It was truly extraordinary, so many women of the world showed up to support me in the World Focus on Autism event, so I’m planning on having that every year. Many of the first ladies last year, including Sarah Brown (wife of British Prime Minister Gordon Brown), and the first lady of the Philippines, there’s a list of the first ladies that did autism awareness public service announcements in their country for World Autism Awareness Day.
So I think that speaks a lot to the first women of the world, and I had my first gentlemen, his wife is the president of the Philippines, and he showed up. What I did was I called on all of the countries to have a call to action — this should be the next Decade for Autism. I said we need to raise $100 million, and so far we are coming up on $11 million [$10.1 million as of mid-October]. So they’re responding, they really are responding. They’re coming up and saying we need to do something, and I’m very proud to say that many of them are my friends now, and they really want to help.
Jerry Seinfeld said how terrible this is and he said he’d like to do a concert for me, so he did our first one out at the Kodak Theater, in L.A. Our friend Jay Leno did one, and Bill Cosby did one, and Lionel Richie did one, and now Jerry is doing one on November 17 at Carnegie Hall. He wanted to do one here in New York. Bob was able to get Bruce, he wanted Bruce Springsteen to open, and so Bob was able to get Bruce Springsteen to open for him; it’s going to be quite something. I asked David Gregory, our dear friend and he’s going to be the host. So that should be coming up to a million dollars so far in that concert, which is very exciting.
More With Celebrity Influencers
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.