In April 2009 Autism Speaks' Co-founders, Bob and Suzanne Wright, traveled to Riyadh, Sauidi Arabia, as their first stop in a two week international awareness building mission. The following article appears in the Summer 2009 issue of Oasis Magazine, a Saudi Arabian lifestyle quarterly that highlights the best of what the region has to offer the world, and focuses on global issues. The article below is reprinted by permission of Oasis Magazine. Learn more about the Wrights' trip to Saudi Arabia here and their time in Qatar here.
From left, Suzanne Wright, Dr. Saleh Al Salehi, Bob Wright in Saudi Arabia
Autism Speaks in Saudi Arabia
By Rania Khalilieh
It takes a philanthropist to knead a personal tragedy into a universal issue. Moreover, it is a big challenge to stir up dormant topics and speak on behalf of a silent person in a harsh and indifferent world.
“True greatness consists in the use of a powerful understanding to enlighten oneself and others” Voltaire
Bob and Suzanne Wright are the true embodiment of altruism. They were able to mold their personal dilemma into a universal movement when they realized that their grandchild was diagnosed with autism.
“At that time, autism was misunderstood and disregarded by the majority of people which was totally frustrating for parents who had autistic children. We felt alone and left out, but we were resolved to change the whole situation. Someone had to speak on behalf of those autistic children and their families.” Commented Suzanne Wright; a woman of strong determination and insight.
The whole process could have been way easier had Bob used his former post as CEO of NBC to obtain the best care for his autistic grandchild and managed to go about their dilemma without making a great issue of it. However, because both Suzanne and Bob Wright are believers in what Gandhi once said: "Be the change you want to see in the world”; they took a different path by founding “Autism Speaks”.
The Birth of Autism Speaks
Autism Speaks is an organization that advocates autism through sponsoring researches, spreading awareness, supporting the involved families and reaching out for the government and public. Autism Speaks was founded in February 2005 by Bob Wright as a reaction to the discovery that one of his grandchildren was autistic. “ The brutal fact was that autism was mal-diagnosed and labeled by professionals as behavioral abnormality, it was not common to diagnose a child as autistic, as a result of that, parents were devastated and frustrated by not knowing what was wrong with their child.” added Bob Wright; an ambitious and intelligent man.
Autism Speaks is reaching out to countries through Global Autism Public Health Initiative; many goals are set such as increase autism awareness, improve access to high quality clinical services, and enhance research collaboration around the world.
A Brief View of Autism
Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. It is a group of disorders known as autism spectrum disorders (ASD). Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors such as following specific schedules or arranging objects. One fact should be kept in mind is that autism can range from very mild to quite severe. Autistic people are unable to be affectionate or reciprocate affection even to the closest people to them. Ironically, autistic people could be talented musicians or mathematicians; they can decipher complicated codes but can't say or show love or attachment to anybody.
100 Day Kit
One of the numerous achievements of Autism Speaks is the issuing of “100 Day Kit” which guides the parents of autistic children to the various aspects of autism. It is divided into ten sections which explain in detail the nature of this illness, how to deal with it when diagnosed, the needs of the autistic child and the different methods of treatment. However, the most interesting section is six which contains a week by week plan for the first 100 post diagnosis days.
According to this kit, a great majority of cases of autism are idiopathic (i.e. the cause is unknown); a small number of cases can be linked to genetic disorders such as Fragile X, Tuberous Sclerosis, and Angleman's Syndrome, as well as exposure to environmental agents such as infectious ones (maternal rubella or cytomegalovirus) or chemical ones (thalidomide or valproate) during pregnancy. In addition to that, it is estimated that one in every 150 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.
Baby steps towards gigantic changes
“We were faced with many obstacles initially, but the most frustrating one was the lack of awareness by a system that would not identify such a disease. We were shocked to discover the great number of people who were inflicted by autism and crippled by the lack of proper medical help or support. We had to get things on the go and we had to speak on behalf of all those who were unable to stand up or speak for themselves. The wheel is on the go, people are more aware of autism, they speak of it in public and the government has become an active partner in this whole process. We feel that we are getting closer but we are not there yet.”
In retrospect, a bill that requires insurance companies to cover diagnosis and treatment of autism in children is the first bill filed in the State of Senate for the 2009 legislative session. The Senate bill is entitled “Nick's Law” and the name is for 11-year-old Nick Rhode of Edmond, who suffers from autism. In addition to that, President Obama has drafted a comprehensive autism legislation including a section addressing a broad based federal insurance mandate; this legislation is entitled “Autism Treatment Acceleration Act of 2008”.
Global Autism Public Health: A Proposal for Partnership with Saudi Arabia
Mr. Bob Wright indicated clearly that both, himself and his wife, were impressed by the efforts undertaken by the Prince Salman Center for Disability Researches which involves spreading the awareness of autism, yet the needs are increasing which means that the services need to be increased as well. For this purpose, Autism Speaks is working in collaboration with the different related bodies in Saudi Arabia in order to enhance and move forward the services offered for the autistic society. GAPH involves increasing access to clinical services as well as research collaboration concerning Genetics such as the one at King Faisal Specialist Hospital.
According to the GAPH Initiative, there will be an initial meeting which will include representatives from the government agencies, experts such as Prince Salman Center for Disability Research, the King Fahd Medical City, and the King Faisal Specialist Hospital, as well as parent representatives and advocates including representatives from Autism Speaks from both US and Uk. One of the goals for such a committee will be the development of a national planning group and a report which will be referred to as “white paper” that describes the major challenges to autism care in Saudi Arabia and recommendations to overcome these challenges.
Suzanne and Bob Wright wrapped up the most amazing and fruitful conversation ever with complete modesty by saying: “We know we have achieved a lot, we are half way through the tunnel and although we see the light at the end, yet we feel that we still have a long way to go. Autistic society has many needs and demands; the more we do the more we feel there is more to do. Success can't be measured or limited, it goes beyond any limitations; it is an ongoing process. We hope that Autism Speaks can be a beacon for others to continue our path and flourish for the sake of all autistic people.”