This post is by Bob and Suzanne Wright, Co-Founders of Autism Speaks.
The horribly tragic situation at Penn State University is a sobering reminder of what can happen when the powerless have no voice and powerful institutions have no one holding them accountable. It is the cause and effect result of power dynamics at its most extreme, where institutional dominance is protected over the safety and well being of the most vulnerable; where the most trusted have committed the most serious betrayal. We have seen this pattern before with the Catholic Church scandals and now with the allegations at Syracuse University.
Autism Speaks is, first and foremost, a voice for people with autism who often do not have the ability to speak for themselves, nor the resources or power to affect the change our community needs. Sadly, individuals on the autism spectrum are often teased, bullied, and abused physically and emotionally. We continually fight to raise awareness of autism, to educate the public and urge the government to dedicate critical resources for services for people with autism. However, our responsibility as advocates must now extend to a much broader community. To truly exhibit the role of advocates, it is incumbent upon us to stand up for all children, wherever and whenever they are in peril. We must be active protectors of our children – it is not enough to express outrage.
Every organization that exist to advocate for children – big and small, national and local – must step up now, join together and demand action. Justice in Pennsylvania should be our immediate priority. Meaningful, measurable change in how we protect our kids must be the ultimate goal. We have to do more and do better. What happened in Penn State is a shame and a crime. It is also a collective failure. The failure of Penn State was years in the making; we cannot allow it to take years to conclude.
This tragedy must become more than a cautionary tale. It is a rallying call to all those who care about the welfare and well being of children to bring about real change.
· We call for the U.S. Attorney’s Office to investigate federal crimes that may have been committed to get to the truth and hold those accountable to face the consequences of their collective neglect;
· We implore other national and local child welfare organizations to stand up and sound the alarm to protect all children everywhere;
· We ask the governor and the university board to waive its exemption from the state open record law so that parents, families, victims and the media can have access to all the records in this case since 1995.
When a disaster of this magnitude occurs, it is important for all of us to step up and speak out. Bringing our collective influence to bear, we can all make change happen and be the advocates and protectors our children deserve.
Bob and Suzanne Wright
Co-founders, Autism Speaks
1 East 33rd Street, 4th Floor
New York, NY 10016
In early November, 2011, Dad and I loaded a large painting I’d created for Autism Speaks into our minivan and drove the 1100 miles from Missouri to New York City to present it to them. Because the painting was so big, it probably took me longer to complete it than any other painting I’ve ever done. In the middle of the painting is the blue puzzle piece that is the symbol for Autism Speaks. The overland around the puzzle piece is the color complement of blue, variations of the color orange. Small hearts are lined up throughout the painting; in the orange area the hearts are warm colors; red, orange, and yellow; in the puzzle piece, the hearts are cool colors; green, purple, and blue. The hearts are intended to depict the feelings that people with autism have that many people don’t realize they possess. They also symbolize the love and care that parents, teachers, and other mentors give people with autism.
I presented this painting in a small conference room in the Autism Speaks offices. Just as you wrap presents up for birthdays and holidays so whoever it’s for can’t see what it is until it’s time, I put a big cloth over the painting as we brought it in so I could “reveal” what it was when I got there. It was to be hung in that same room, and I understand that in honor of that painting, they renamed it the “Taylor Crowe Conference Room.” I was videotaped unveiling the painting and talking about it. A few short hours later, an editor at Autism Speaks put that footage on the web for people on the internet to enjoy.
Although I’ve had my driver’s license for 13 years, because of my autism it has taken longer for me to master the art of driving than most people, so I still sometimes need parental supervision when I drive. I continually get better and better. On this trip I got lots of highway driving in, but I also felt I needed experience driving in New York City, so I drove with dad supervising! It wasn’t so much dangerous as it was slow; it took forever just to get in and out of one street! Although I needed the experience and Dad said I did great, I never wanna drive in New York City again, it’s just too nerve-wracking! I was always told that defensive driving is hard with autism because those of us with autism expect other drivers to follow the rules, but drivers in Manhattan don’t drive defensively, either! They drive offensively!
Former NBC head Bob Wright founded Autism Speaks after his retirement circa 2005 to spread hope and seek help for his grandson who had recently received an autism diagnosis. Wright and wife Suzanne are very committed to helping their grandson and future generations of autistic children. I did not see the Wrights on the trip when I delivered the painting, but I did meet them in April, 2010. On that trip I was involved in a dinner with retired basketball stars from the NBA, including my cousin who played for the Knicks, Bill Bradley. I got to introduce him when he spoke that evening. Since Bradley and Wright know each other and both have relatives with autism, that evening was very important to them. I was quite proud to be there.
Autism Speaks has applauded Governor Andrew Cuomo for signing one of nation’s strongest autism insurance reform measures into law and defended his action in letters-to-the-editor published in the Wall Street Journal and the New York Post.
We are excited that New York Governor Andrew Cuomo has signed into law one of the most comprehensive autism insurance reform measures in the nation, Assembly Bill 8512. This new law requires insurance companies to provide coverage of critical autism therapies for both children and adults. Autism Speaks Co-founders Suzanne and Bob Wright and representatives from New York’s autism community gathered for the bill signing at the Governor’s Office in Albany. For a fact sheet on the new law, go here.
Sponsored in the New York Assembly by Assemblymember Joseph Morelle (D-Monroe) and in the Senate by Sen. Charles Fuschillo, Jr. (R-Nassau,) the new law will provide coverage of evidence-based, medically necessary autism therapies, such as applied behavior analysis (ABA). It will take effect in 12 months – on November 1, 2012 – and allow up to $45,000 a year in ABA treatments with no limits on age or number of visits.
Autism Speaks Co-Founders Honored with 2011 Leadership Award by Citizens United for Research in Epilepsy (CURE)
Citizens United for Research in Epilepsy (CURE) paid tribute last evening to Autism Speaks Co-founders, Suzanne and Bob Wright, with the 2011 Leadership Award at a gala benefit in New York City. The Wrights were honored for their ongoing work with autism. Right now, up to 30% of children with autism also have epilepsy.
CURE Founder and Chair Susan Axelrod and her husband, David Axelrod, reported on CURE’s research progress and urged support for cutting-edge epilepsy research to make a future without epilepsy a reality.
During the event, Bob Wright announced a new partnership with CURE; a high-level autism and epilepsy research conference with the National Institute of Neurological Disorders & Stroke at the National Institutes of Health (NIH). The collaboration between CURE, Autism Speaks, and the NIH will take place in spring 2012, and will be critical in developing joint research priorities to pave the way for breakthroughs and cures. “Through this partnership with Autism Speaks, CURE believes we will begin to expedite research to benefit both causes,” Axelrod commented.
“We want to extend our deepest gratitude to Susan and the Citizens United for Research in Epilepsy for honoring us,” said Bob Wright. “There are many commonalities between epilepsy and autism and neither have received the funding they merit based on their high prevalence. We are confident this partnership will help provide answers.”
George Stephanopoulos and Alexandra Wentworth returned as co-hosts of the benefit and special guest Peter Sagal, host of NPR’s “Wait Wait… Don’t Tell Me” was the featured CURE auctioneer.
Also receiving awards were Joe Scarborough and Mika Brzezinski of MSNBC’s “Morning Joe” were honored with the Excellence in Journalism Award for raising awareness of the challenges in finding a cure for epilepsy. Dr. Shlomo Shinnar, MD, PhD, Professor of Neurology and Pediatrics at Montefiore Medical Centerand the Albert Einstein College of Medicine, received the CURE Leadership in Epilepsy Research Award.
Since its inception in 1998, CURE has funded 116 research grants at 71 institutions across 28 states and 9 countries. The benefit raised over $700,000 for epilepsy research.
Last night was quite a night for Autism Speaks. More than 100 of the nation’s finest chefs put on a culinary extravaganza at the Autism Speaks to Wall Street: 5th Annual Celebrity Chef Gala at Cipriani Wall Street in New York City and was sponsored by Susan and Steven Wise of KRG Children’s Charitable Foundation, Charmz 4 Charity and Puzzlebuilder among other top sponsors. The annual fundraising event – which can easily be described as a foodie paradise – brought together the biggest names in the restaurant world for an amazing evening that raised $1.6 million for Autism Speaks’ research and advocacy initiatives.
The event was emceed by NBC’s “Minute to Win It” host and Food Network personality Guy Fieri, and co-hosted by CBS “60 Minutes” correspondent Lesley Stahl and Lee Brian Schrager of Southern Wine and Spirits of America. It featured a cocktail reception, auction and the unique experience of four-course tableside cooking by nationally acclaimed chefs such as Bravo’s “Top Chef” lead judge Tom Colicchio (Colicchio & Sons); Franklin Becker (Abe & Arthur’s, Catch and Lexington Brass); Todd English (ÇaVa Brasserie); Masaharu Morimoto (MORIMOTO); Wylie Dufresne (WD-50); Terrance Brennan (Artisanal, Picholine); Food Network’s “Chopped All-Stars” champion Nate Appleman (Chipotle) and “Iron Chef” winner Katsuya Fukushima (Daikaya Restaurant). Autism Speaks Co-founders Suzanne and Bob Wright served as the evening’s honorary co-chairs and Jennifer and Franklin Becker, Susan and Philip Harris, Alison and Duncan Niederauer, and Suzanne and Shawn Rubin served as the event co-chairs.
Highlights from the event include Guy calling Autism Speaks President Mark Roithmayr and KRG Chairman Steven Wise onstage for a “Minute to Win It” contest of stacking apples. Wise wowed the crowd by balancing five apples in about three seconds for the victory! Guests were also treated to a special performance by Rex Lewis-Clack, a young pianist and vocalist who is faced with the challenges of blindness and autism, and opera singer Sam McElroy, who has been coaching Rex on his singing. Introduced by his friend Lesley Stahl, Rex captivated everyone in attendance and received numerous standing ovations. It was a truly masterful performance that equaled the efforts of the illustrious chefs who graciously donated their time and talents to Autism Speaks on a wonderful evening.
On Monday, September 26, 2011, Autism Speaks celebrated its 2nd Annual Autism Speaks Fall Classic at the illustrious Baltusrol Golf Club in Springfield, NJ. Joined by Title Sponsor ShopRite and Tournament Sponsor GTS-Welco, we hosted an exciting afternoon golf tournament and evening reception that raised over $268,000 for Autism Speaks’ research and advocacy initiatives! The tournament kicked off with a shotgun start on Baltusrol’s famed lower course and featured several contests, including the US Bancorp Million-Dollar Shootout, prizes distributed for the longest drive and the Bachman Putting Contest where qualifiers could compete to win a $10,000 prize.
The day wrapped up with evening cocktails, and a silent and live auction which offered guests an opportunity to help fund Autism Speaks’ initiatives for adults with autism. Honorary Co-chair and Autism Speaks Co-founder Bob Wright showed a highlight video from the second annual “Light It Up Blue” initiative on World Autism Awareness Day, on April 2. He also honored longtime Autism Speaks supporter Joe Kernan, host of the CNBC’s popular morning show “Squawk Box.” Event Co-chair and President of the Bachman Company Scott Carpenter welcomed another honoree, fourth grader Zachary Brooks, a tireless advocate for Autism Speaks whose twin brother, Jack, is affected by autism. Carpenter also introduced a special “thank you” video message on behalf of his fellow Co-chairs: his wife Suzie, John and Nico Sumas of ShopRite, Peter and Heather Kapsimalis, and Anne and Dave St. Clair. The video summed up why it’s so important to help raise awareness and funds for Autism Speaks, and expressed gratitude to everyone involved in making the Fall Classic such a special day.