DPI/NGO Briefing

Understanding and Celebrating Autism
In Observance of the 1st World Autism
Awareness Day (2 April)

3 April 2008

Summary

The event was held in observance of the 1st World Autism Awareness Day. The briefing celebrated people with autism, their families and friends. It paid tribute to their daily struggles and highlighted the importance of a better understanding of the disorder. The briefing covered areas of concern regarding autism, on the national and international level, and recognized the disorder as a serious public health issue of today. A short film, produced by the NGO section of DPI was screened before the panel discussion. The speakers included; Dr. Edwin Trevathan, Director, Centres of Disease Control and Prevention; Mrs. Suzanne Wright, Co-Founder, Autism Speaks; Mr. Bob Wright, Co-Founder, Autism Speaks; Mr. Lee Grossman, President and C.E.O., Autism Society of America; and Ms. Valerie Paradiz, Co-Founder of the Open Center for Autism. The event was moderated by Ms. Lynda Baquero, News Anchor, WNBC, Channel 4, New York. Special guests in the audience were recognized for their advocacy and personal efforts for the cause. Opening statements were made by H.E. Mr. Kiyotaka Akasaka, Under-Secretary-General for Communications and Public Information.

Dr. Edwin Trevathan began by discussing autism from the international point of view, stressing that autism can be found in every part of the world. He explained that autism can not be categorized as one specific type of disorder, because it consists of a group of different disorders and the definition of autism changes over time. The research on causes of autism is one of the biggest studies to be conducted by the Centers for Disease Control and Prevention. He referred to the importance of early diagnosis as critical to the progress of a child with autism. While most children do not get diagnosed until they are 5 or 6 years old, diagnosis can be made at 18 months and sometimes younger. Dr. Trevathan recommended that treatment started even when the diagnosis could not be fully confirmed as it can only be beneficial. He concluded by emphasizing the Centers for Disease Control and Prevention’s commitment to research causes of autism and to mandate early diagnosis to ensure the necessary early intervention processes.

Mrs. Suzanne Wright began by expressing gratitude to Juan Carlos Brandt from DPI/NGO Section and his wife Jacqueline, for the WAAD's initiative. Then, she thanked the Government of Quatar for their leadership on this issue within the United Nations. She noted the remarkable accomplishment of establishing the annual World Autism Awareness Day (WAAD) less than a year after it was first suggested. She added that passing this resolution had given people with autism the validation they need. Mrs. Wright noted the importance of this celebration for all the people and organizations around the world working for this cause. She spoke about the need for doctors to be better informed about the disorder and mentioned the initiative taken by the American Academy of Pediatricians to mandate screening for autism twice before children are 24 months old. Mrs. Wright concluded by noting that WAAD was a call to action.

Mr. Bob Wright began by noting that one per cent of the male population in the United States had autism. He spoke about the importance of both, ground level work and work being done at 10,000 feet. An example of the first was families struggling to gather and share information among themselves while the work being done at 10,000 feet consisted of research into genetic and other possible causes of autism. He emphasized the need to close the gap between the two in order to make significant progress. He furthermore compared the resources available to people with autism and their families in the United States to the resources available abroad. As the United States was one of the few countries to provide statistics on autism it was important to share this information in order to have the evidence to support the need for services. He also spoke about the fundraising efforts of his organization and briefly discussed the “Autism Treatment Network” where people and organizations could share information to establish the best protocols and practices of treatment

Mr. Lee Grossman noted that in terms of appropriate medical and other assistance, people and families with autism were – to a large extent – left to “fend for themselves”. Not enough was done in providing resources for this community and lessen the economic burden of autism on families. Mr. Lee emphasized the need for policies that require all hospitals and physicians to be educated in autism and to recognize autism as a lifelong disorder. He stressed the importance of improving early identification processes in order to help people with autism live meaningful lives. Autism is a human rights issue and countless families endure discrimination on a daily basis. Mr. Lee said that governments needed to stand behind the initiative of distributing knowledge and information about autism. In the case of the United States, if a budget were to be created to aid the American population with autism, 60 to 90 billion dollars would be necessary to meet the daily needs of this population.

Ms. Valerie Paradiz spoke from the perspective of an educator, a person diagnosed with autism at age 40, and a parent of a teenage son with autism. Ms. Paradis started by saying that “it takes a lot to make the invisible visible.” Often people with autism were invisible to themselves as they were missing important key elements of self awareness. Ms. Paradis noted that the equation was quite simple; the more visible people with autism are, the more their lives can improve. Ms. Paradis expressed her hope for establishing curricula promoting self awareness. She cited the importance of helping people with autism develop interests and celebrate their strengths.
Ms. Paradis added the importance of looking past autism as something affecting children only and recognizing it as a lifelong disorder. She concluded by emphasizing the need to create more programs for girls and women with autism.


During the event, special guests were acknowledged for their personal advocacy efforts in raising awareness of autism. Ms. Alex Abend, a New Jersey teenager with a 9-year-old brother with autism, was recognized for her work in organizing a “Family Night” for families with autism. This successful project makes it possible for people with autism and their families to enjoy a night out for dinner, without being judged by others. The project is growing and has participating TGI Friday restaurants in New Jersey, Connecticut, and New York. Another teenage girl, Ms. Stephanie Davis, who has two cousins with autism, was recognized for her advocacy and fundraising efforts. By making and selling pins and other products she has raised USD$ 25,000 for research on autism. Ms. Leven Rambin, a teenage actress, was recognized for her support and advocacy for autism. She is known for playing a character with autism on “All My Children.” Ms. Rambin spoke about her efforts in hosting and participating in events to raise awareness of autism. Ms. Karen Nisenson, Founder of Arts for Healing, was also recognized for her awareness-raising work and advocacy related to autism. Ms. Nisenson discussed the important role that the arts play in progressive therapeutic therapy for people with autism. Mr. Elijah Watner, 17, Ms. Valerie Paradis’ son, gave a poignant speech referring to his personal experience of growing up with autism. Mr. Watner, who did not speak in complete sentences until age seven, spoke eloquently about his successes and challenges. He is currently traveling around the country with his comedy show to promote awareness and understanding of autism and bring a sense of humor to the topic.

During the question-and-answer period, a question was asked in regards to autism and vaccinations. Dr. Trevathan said that more than 15 studies have been completed that have examined a possible vaccine-autism link. These studies have not suggested any causal relationship between vaccines and autism. Studies on the autism and vaccine question are ongoing. However, we now know that we must look at other potential causes and modifiable risk factors, as vaccines will not be the answer. There will be many different potential causes of autism, and we must continue these investigations even if these other potential causes do not receive much attention in the press. For example, the CDC-funded SEED (Study to Explore Early Development) is the largest study to date examining potential causes of autism. SEED will have approximately 2700 children enrolled, with genetic and other factors studied in detail. A question was asked with regard to biomedical treatment of autism, specifically the gluten-free diet, and how the effect of these methods. Mr. Grossman responded to this question by noting that approximately 30-60 per cent of people with autism suffered from gastro-intestinal problems. A gluten-free diet could potentially reduce negative reactions to any irritating gastro-intestinal conditions. A question was asked regarding joining advocacy efforts for autism. Mr. Grossman responded by saying that a critical mass of people in the society was needed in order to influence policy. Ms. Paradiz added that advocacy can be done on a daily basis by sharing information with friends, family, neighbors, and co-workers. A worker in one of the Agencies from the NY Health Department reported that some parents, whose children receive Early Intervention Services, decide to suspend those services at age three, in order to avoid the "Special Needs" label. They choose to discontinue services so as to keep their autism confidential. A question was asked in regards to the labels of autism and how this affects progress. Mr. Wright noted that people needed to look past the label and embrace it in order to receive appropriate and effective treatment. Mrs. Wright added that autism was nothing to be ashamed of and it cast no blame. A question was asked in regards to the rising numbers of cases of autism today. Dr. Trevathan responded by noting that causality was a complicated matter, but the environment may play a significant role in this phenomenon. He noted the efforts of the National Children Study, which will follow 100,000 women while pregnant to collect information and examine possible causes of illnesses their children may possess. Toward the end of the meeting, someone expressed the hope that by next year, during the WAAD observance, there would be an established World Autism Organization so that all regions of the world could be represented in a truly, global fashion.

The briefing was attended by about 200 representatives of NGOs, United Nations and Permanent Mission staff. The archived webcast of the event and the “Understanding and Celebrating Autism” film are available at http://www.un.org/dpi/ngosection/spring08/
briefings/Brief_3april08.asp

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