Global Perspectives on Autism

Yesterday, May 31, USICD staff attended the House Foreign Affairs Subcommittee on Africa, Global Health, and Human Rights’ hearing entitled Global Perspectives on Autism: A Growing Public Health Crisis.  The hearing, led by Congressman Christopher H. Smith (R-NJ), focused on new and emerging information about autism in the global community and the challenges that nations face in addressing this complex developmental condition.   The witnesses were Andy Shih, Vice President of Scientific Affairs for Autism Speaks; Arlene Cassidy, CEO of Autism of Northern Ireland; Brigitte Kobenan, President and CEO of Autism Community of Africa; and Tom McCool, President and CEO of Eden Autism Services.

Speakers offered testimony about the challenges of advocating for services and rights for people whose conditions are often invisible or misunderstood by local communities.  Arlene Cassidy described how many people with autism did not qualify as disabled under national disability legislation in Ireland until the Autism Act of 2011, which requires data collection and agency collaboration across the Irish government.  A mother of an autistic child, Brigitte Kobenan offered testimony that lent a personal account of the difficulty in receiving services in Africa for an autistic child.  Funding for autism in Africa often is marginalized in favor of health problems such as HIV and malaria, which populations and governments more readily understand.  She indicated that in some regions people with autism confront the stigma of being a bad omen, and needing to be hidden from society.  Tom McCool discussed his organization’s involvement on a global level, offering trainings to service providers throughout the world including Singapore, Israel, South Africa.  Finally, Andy Shih emphasized that definitions of autism are constantly changing, becoming more complex.  He predicted that terms such as autism and Asperger will fall away and we will soon know a variety of autisms much like people are accustomed to a variety of cancers.

Questions from the Subcommittee focused on steps the U.S. could take to aid autism support providers through data collection and awareness-raising efforts.  The Subcommittee was interested in learning from what other countries’ successes in providing effective services, and hoped to continue an collaborative international effort on the topic of autism. 

Congressman Smith ended the hearing with a strong message, reminding the audience that as child mortality decreases rates of autism will continue to steadily increase.  He said it was imperative to be ahead of the curve on autism research.  He noted how the U.S. only recently began to significantly invest in autism research and services.  Congressman Smith stated autism is an international pandemic and hoped that the U.S. can start to invest more tax dollars into research and services, and to work with bodies like the United Nations to address this autism on an international level.  

For full text of testimonies, please visit http://foreignaffairs.house.gov/hearings.asp.