'Israel must do more to raise awareness about autism'

We need to focus on diagnosis and treatment, says US activist couple.

couple 224.88 (photo credit: Ariel Jerozolimski)
couple 224.88
(photo credit: Ariel Jerozolimski)
Suzanne Wright talks in numbers. For her, the world is clearly measured in the percentages of children and adults who suffer from the neurobiological development disorder known as autism, and for her those figures speak louder than a thousand words. "In your [former] country, the UK, the percentage is very high: One in 80 children is diagnosed with autism," begins Suzanne, as we sit together in her suite at the David Citadel Hotel in Jerusalem on Monday. Later on in our interview, she adds that in her native US, it's one out of every 150 children, with one in 94 boys being diagnosed - and in Israel, the official estimate is one in 214. "Its roughly one percent of the male population globally," continues Suzanne, who together with her husband Bob founded one of the US's fastest-growing nonprofit organizations, Autism Speaks, three years ago. "[Our main goal] is to formulate a real understanding of autism and its significance on the population of each country," joins in Bob, who stepped down as chairman and CEO of NBC Universal last year and currently serves as vice chairman of NBC's parent company, General Electric. "The two most important things we need to focus on are early diagnosis of autism and its treatment. Simultaneously we must fund all the necessary global research, finding the cause and a cure." The dynamic couple, who travel worldwide to raise awareness of the condition, believes that cases of autism in children globally have reached epidemic proportions, with public awareness trailing far, far behind. As part of their work with autism, the couple is in Israel this week to discuss mutual cooperation with government officials, professionals and scientists in the field. Among those who met with the Wrights were leaders from Alut, the Israeli Society for Autistic children, as well as Welfare and Social Services Minister Isaac Herzog and the prime minister's wife, Aliza Olmert. While Bob and Suzanne clearly run their charity like a high-powered business venture, it is their personal connection to autism that makes their compassion for the unexplained condition even more impressive. "Our grandson was diagnosed with autism three years ago," explains Suzanne. "He was developing beautifully, and then problems started appearing at 18 months. By the time he turned two-and-a-half, he was gone." Some of the doctors blamed his regression on the birth of his next sibling, recalls Suzanne. "They said that sometimes that happens to boys when a new baby is born, but in light of this autism epidemic, I say that we need to end these old wives' tales now. They can no longer be told to young mothers, because it is not the truth. The truth is that we need to be screening for autism." "It is time to focus intensely on early diagnosis and intervention," agrees Bob. "While not every child flourishes from intervention, there is proof that if children are helped during their early years, then when they get to first grade, they will most likely be able to function at an age-appropriate level." After their grandson's diagnosis, the Wrights decided that "something of this magnitude" needed a "national voice." The two set up Autism Speaks with a $12 million donation from Jewish philanthropist Bernie Marcus. In the three years since its inception, the Wrights have succeeded in raising awareness of the condition via $100 million in donated media advertising, created local support networks for families and initiated a nationwide annual walkathon for autism that politicians have no choice but to "pay attention to," says Bob. Internationally, the two have been working together with statesmen and -women from across the globe, including Sheikha Mozah Bint Nassar al-Missnad, wife of the Emir of Qatar, who assisted Autism Speaks in convincing the United Nations to take up the challenge, too. "During a presentation last June at the UN, we thought of having a resolution for world autism awareness day," says Suzanne. "No one thought it would happen so quickly, but after Sheikha Mozah cosponsored it with me, we persuaded 50 countries in the UN to be our cosponsors, and on December 18, 2007, the gavel came down and World Autism Day [marked April 2] was born." The couple highlights that the UN has only agreed to have similar recognition days for AIDS and diabetes. In terms of their future work with Israel, the Wrights say they are impressed with the efforts being made by organizations such as Alut and children's special-needs hospice Aleh, as well as the cooperation here between the nonprofit sector, the government and medical institutions. However, they say, Israel, like the rest of the world, still has a long way to go in raising awareness. "If our [autistic] kids had crutches like polio victims or had their hair shaved off like children with cancer, if we had a visual picture of how terrible autism is, it would change the world," says Suzanne with conviction. "However, we have to rely on our advocacy and the facts in order to change the world." She finishes, "It is an epidemic that is all around the world, and it is time we brought this to the global stage - because when Autism speaks, the world has to listen."