This post is by Mark Roithmayr, President of Autism Speaks.
It is before dawn and I am about to depart Albania. What we have learned about autism, Autism Speaks, Albania, and our role in the world is almost too overwhelming and humbling to put into words.
I was there to celebrate the opening of the Albanian Children Foundation’s Regional Centre for Autism, dedicated to helping children with developmental disabilities to receive a diagnosis, appropriate treatment and services.
Liri Berisha, M.D., and her husband the Prime Minister, Mr. Sali Berisha, took every opportunity to note that without Autism Speaks and Suzanne and Bob Wright, none of this would be possible. What a statement! As I looked at the new Centre I was in awe of all they had accomplished in a country the size of Albania. What an amazing accomplishment – and the hope they are now providing to the autism community in Albania was palpable.
In between attending events and dinners, my wife and I visited Albania’s first autism center that has been seeing families the past two years. We witnessed the wonders of the first children receiving ABA therapy in Albania and the success they have had. We met with the therapists, administrators, and Ministers who are now developing the nation’s first National Autism Strategy. And then, in the new Centre, we presented to parents who literally had tears in their eyes because of the hope that is now becoming reality for their children.
The day Suzanne got the UN to unanimously approve the creation of a World Autism Awareness Day made all of this possible. One of our many achievements is making autism a global initiative. Our Global Autism Public Health (GAPH) initiative is moving this forward at an amazingly rapid pace. We are moving nations and bettering the lives of children and families around the globe – and not by ourselves, but by helping other countries to learn from our experiences and providing guidance to create their own programs.
We are one organization among many. We are largely supported by families – those who walk and fundraise, one dollar at a time, to change the world. It’s working.
Hey everyone! We have a really exciting opportunity to celebrate World Autism Awareness Day, and we need your help!
The United Nations is looking to feature artwork, by an individual on the autism spectrum, for a special 2012 Autism Awareness stamp. All you need to do is upload your artwork to a special album on Facebook to be in the running! Remember, your art will be on a postage stamp, so the artwork has to look good on a small scale!
The deadline is November 4, 2011 – so get your submissions in! Use your imagination and be creative, the design is totally up to you!
You can upload your photos to our Facebook Wall! Please be sure to copy and paste the link underneath!
For the fourth year in a row Autism Speaks brought together first spouses and esteemed dignitaries, including ministers of health, from more than 30 countries around the globe for the Fourth Annual World Focus on Autism. The event, held on Tuesday, September 20, 2011, was part of an ongoing effort to raise global awareness and share best practices for countries, communities and families struggling with this non-discriminative disorder.
Mrs. Ban Soon-taek, wife of the U.N. Secretary-General, Ban Ki-moon, in her fourth year of attendance joined event hosts Suzanne and Bob Wright of Autism Speaks. Additional distinguished guests included event Co-host Dr. Cecelia McCarton, executive director and founder of The McCarton Foundation and the McCarton School, and emcee Sue Herera of CNBC’s “Power Lunch.”
Attendees convened at The McCarton School, which provides an educational program for children with autism by using an integrated one-to-one model of therapy grounded in Applied Behavioral Analysis (ABA) combined with speech and language therapy, motor skills training and peer interaction. “This school has given so much to our children with autism, and we wanted each of you to experience it firsthand today,” said Suzanne Wright. “It’s here under this roof that the meticulous work to connect with our children with autism takes place.”
United in a global cause, a record number of dignitaries attended, including the first spouses of Albania, the Republic of Cyprus, Finland, Grenada, Jamaica, the Republic of the Maldives, the Republic of the Marshall Islands, Namibia, Nigeria, the Republic of Palau, Saint Lucia, Saint Vincent and the Grenadines, Slovenia, Sri Lanka, and Turkey.
Guests toured the school and met with students, who made glass bead necklaces for the visiting first spouses. Later, the dignitaries assembled to learn about Autism Speaks’ global initiatives – including the annual World Autism Awareness Day celebrated on April 2 and Autism Speaks’ Light it Up Blue campaign; as well as Autism Speaks’ Global Autism Public Health (GAPH) initiative. GAPH initiatives championed by individual countries, as well as regional efforts including the South-East European Autism Network (SEAN) and the South Asian Autism Network (SAAN) were highlighted during the event.
In her opening remarks, Mrs. Ban Soon-taek welcomed the international group on behalf of her husband U.N. Secretary-General Ban Ki-moon stating, “autism touches so many in the world, no matter where they live, no matter how much money they have, no matter their religion, no matter their gender. And like a pebble in a pond, the effects of autism ripple outward to parents, siblings, and caregivers. Autism is at once deeply personal and truly global.”
Speakers at the event included distinguished guests Dr. Liri Berisha, spouse of the Prime Minister of Albania; Dr. Ante Zvonimir Golem, Croatia’s State Secretary for Health and Social Welfare; Professor Saima Wazed Hossain, daughter of the Prime Minister of Bangladesh; and Professor A.F.M. Ruhal Haque, MP, F.R.C.S, Bangladesh’s Minister of Health and Family Welfare; as well as Autism Speaks Vice President of Scientific Affairs Dr. Andy Shih. Each speaker offered remarks on the significance of fostering global partnerships in combating the global public health crisis of autism.
‘World’s First Ladies Take on Autism’ in the The Wall Street Journal.
April 2011, World Autism Awareness Month, has been one of the most memorable times in my life. The last few weeks I have taken part in some unbelievable ‘Light It Up Blue‘ events, met amazing people, and connected with the worldwide community to commemorate World Autism Awareness Month. April was comprised of so many moving parts that came together seamlessly, due to the hard work of so many.
I have been meaning to write a blog post, but I keep hitting walls.
Sure, I drafted a post of my experiences on April 1 and 2, detailing some of my stops: The Today Show with Alpha Xi Delta; WPIX 11 with the incredible students from Pelham; The New York Stock Exchange with our Co-Founders Mr. and Mrs. Wright, state dignitaries, politicians, celebrities and many more prominent people in the autism community. I could write about the reception hosted by ‘Light It Up Blue Rockland,’ in my hometown, when my brother and his housemates were in attendance. I was so proud. Or, the press conference at the Intrepid, which took place on a beautiful Saturday morning.
Throughout this campaign, I communicated with literally thousands of people all over the world. I feel blessed and privileged to have heard their stories and seen their photos. While I worry that I will never be able to formulate the right words to give World Autism Awareness Month justice it deserves, here are some photos that will speak for me:
I can’t forget to include the panel discussion, ‘Solving the Autism Public Health Puzzle: Regional and International Collaboration,’ held at the United Nations, or ‘A Blue Affair’ hosted by Donald Trump Jr. and his wife, Vanessa.
We should also revisit the push to ‘Light The White House Blue.’ I am in awe of each person who submitted a blog entry. More than 1,000 comments were posted and much of the autism community was unified for a common goal.
On April 25, my dear friend Jess, who so bravely and unselfishly shares her beautiful family with us on A Diary of a Mom, was invited to The White House for an event to commemorate Autism Awareness Month. The morning before she headed over to 1600 Pennsylvania Avenue, Jess told me that she would be taking my brother Jeff with her. My heart was full. I couldn’t think of anyone better to represent him. She gives all of those affected by autism the utmost respect and genuine compassion. I will never be able to thank her enough.
However, alongside all of these spectacular and unique moments, the most memorable for me happened on probably the most mundane of all days.
On April 3, once we all were coming down off the Light It Up Blue ‘high,’ my brother came home from his residential house, and I snapped back to reality. We took a walk, as we have done countless times before. My mom, brother, and I have been taking Sunday walks for years, making it almost an institution. We go to different locations, but often find ourselves on the wooded path at the Pearl River Middle School, as we did that day. We are shielded by the trees and find comfort in the trail’s predictable twists and turns.
Before we begin, Jeff’s anxiety kicks in and he asks for a rundown of dates, “Yes, Jeff, next weekend you can order two DVDs off Amazon, in June 2011 we will go to Montauk for a week, in 2014 we will remodel the kitchen …” and so it goes. Then, we are swallowed by the woods, where Jeffery will usually stroll a few steps behind making his noises. My mom and I will smile and greet friendly strangers; some give us knowing and warm looks, while others sort of stare.
As we round the first bend, which borders a putting green at the local golf course, we remind Jeff to quiet down. As per usual, he gets louder, and we laugh. Next, there is a downturn that Jeff always heads down gingerly. He approaches this dip with the caution he exhibits in some everyday activities. If there are any disruptions along the way (fallen tree, broken bridge, mud puddles, etc.), Jeff always takes note – I am positive he remembers every element of the trail from the first day he stepped foot there, over twenty years ago.
We plod along, stopping from time to time to chat about dates. He’ll hold our hands, then jog ahead, or maybe he’ll stop to give us a hug. My mom and I don’t mind – as a matter of fact, we’d have it no other way.
The last leg has a steep uphill that my mom and I sort of dread. Each time, Jeff manages to surge, making it to the top with a smile. He takes on the hill with gusto and courage. This trail reminds me of the journey my family is on. There are times we are slow and anxious, while other times we coast through and laugh. We have down-slopes and upturns, but Jeff always keeps our pace and establishes a rhythm. It may have taken him a little longer through the years, but he has become our fearless leader. Jeff holds us up with his unconditional love and directs us with his strength.
My brother, like the countless members of our community, is brave.
World Autism Awareness Month 2011 has given me a greater sense of community. Together, we will make the world a safer and more welcoming place for my brother, and all of those with autism spectrum disorders. I have a renewed hope, and will be forever changed.
I would like to send a big thank you to each and every person in the autism community.
On Wednesday, April 6, Autism Speaks joined the Permanent Mission of Bangladesh to the U.N. and the U.N. Department of Public Information at the United Nations to present Solving the Autism Public Health Puzzle: Regional and International Collaboration, a panel discussion on autism. The United States Mission to the U.N. also co-sponsored the event, which was streamed live on the U.N. website. (Watch archived video of the whole event here or view it below).
United Nations Secretary-General, Mr. Ban Ki-moon opened the event talking about the U.N.’s commitment to raising autism awareness and creating greater acceptance. “This day is a call to action for all of us who want a more compassionate and inclusive world,” said the Secretary-General. “We have to raise funds to turn workable solutions into practical actions.”
He was followed by Dr. A.K. Abdul Momen, Permanent Representative of Bangladesh to the United Nations and Mr. Fredrick D. Barton, U.S. Representative to the Economic and Social Council of the U.N. Suzanne and Bob Wright also addressed the several hundred dignitaries and families affected by autism in attendance. They updated the audience on Autism Speaks successful Light It Up Blue Campaign, where 1400 buildings turned blue in recognition of World Autism Awareness Day. A video recapping all of the Light It Up Blue activities ran just before the Wrights’ presentation. Suzanne Wright commented on a new collaboration with the U.N. “Through these kinds of meetings, we are making tremendous headway to increased awareness. This translates to innovative research, improved services and better treatments for families.”
The international coalition in attendance represented a wide array of countries. The participation of the some of the world’s top dignitaries demonstrated a striking endorsement of global efforts to raise autism awareness. Members of the audience, which included Mrs. Ban Soon-taek, wife of the U.N. Secretary-General, took part in an interactive panel discussion on autism moderated by Russ Mitchell, CBS Weekend Evening News and CBS Saturday Early Show Anchor. Panelists included Professor Saima Wazed Hossain, Chair of the National Advisory Committee on Autism in Bangladesh; Shekhar Saxena, M.D., Director, Mental Health and Substance Abuse, World Health Organization; Amy Gravino, Asperger’s Syndrome College Coach and Self-Advocate and Geri Dawson, Ph.D., Autism Speaks Chief Science Officer. The panelists discussed an international pathway to raise global awareness and promote research into this non-discriminative disorder. Amy Gravino was particularly poignant sharing her personal struggles with autism, but concluded her story with a message of hope that visibly resounded with audience members, “It is my wish that individuals with autism and Asperger’s Syndrome all across the world will know their own strengths – the skills, the abilities and things they’re capable of, rather than the things they’re not capable of.”
The event was an amazing show of support for the global autism community and a promise of a longstanding partnership.
In celebration of the fourth annual United Nations World Autism Awareness Day, Autism Speaks is co-sponsoring a panel discussion today “Solving the Autism Public Health Puzzle: Regional and International Collaboration” at the United Nations beginning at 4:00 p.m. ET, with the Bangladesh Mission and the United States Mission. UN Secretary General Ban Ki-moon will open the meeting and panelists include Geri Dawson, Ph.D., Chief Science Officer at Autism Speaks, Shekhar Saxena, M.D., World Health Organization, Professor Saima Wazed Hossain, Chair of the National Advisory Committee on Autism in Bangladesh and Ms. Amy Gravino, Asperger’s Syndrome College Coach and Self-Advocate.
The event streamed live on the UN Webcast site. We will update this post with a link to the video once it is available in an archived form.
Julie Walker sat down with Suzanne Wright on United Nations Radio to find out what drove her to become an autism awareness activist. Click here to listen to the interview.