Statement by Joan Prince, Senior Advisor, Addressing the Socio-Economic Needs of Individuals, Families and Societies Affected by Autism Spectrum Disorders and Other Developmental Disorders

Joan Prince, Senior Advisor
New York, NY
December 12, 2012


Thank you, Mr. President,

It is an honor to be here today to speak about addressing the socio-economic needs of individuals, families and societies affected by autism and other developmental disabilities. Today, there is more support for Americans with autism than ever before. Autism is no longer hidden. As recently as the 1990s, scientists believed autism was rare, affecting only 1 in every 2000 children. As we all know now, the truth is much different. Now that we can begin to see the extent of the issues, we can focus our efforts.

In the United States, a big step to support those affected by autism and their families came with the Affordable Care Act in March 2010 which requires new insurance plans to cover autism screening and developmental assessments for children at no cost to their parents. Insurers in the United States would no longer be allowed to deny children coverage for pre-existing conditions like autism, or to set arbitrary lifetime or annual limits on benefits. This new law and other legislative protections allow us to continue important research and to develop and refine vital treatments.

Through the innovative programs of the U.S. government, the United States is working to address key questions and provide quality support and services to all families affected by autism. The Centers for Medicare & Medicaid Services are working with states to shape their Medicaid programs to help children and adults with autism get the home-care assistance they need to take control of their own lives and thrive. The Centers for Disease Control and Prevention closely track autism in communities across the nation, allowing us to better understand who is affected by autism and what the risk factors are – and to promote early detection.

While there is a great deal going on in the United States, we have also established international collaborations with many countries across the world. Puzzles can often best be solved by partnerships – and so it will be with autism and deepening the understanding of what puts our children at risk.

Mr. President,

The United States is pleased to be able to join consensus on resolution L.33 now before us for adoption. In supporting this resolution we bear in mind that autism is one of many different kinds of disabilities, and while we credit the sponsors’ good intentions for highlighting the needs of individuals, families and societies affected by autism, we note that a number of the issues raised here are also applicable to many people with a variety of different disabilities. Issues of stigma, discrimination and exclusion are all too common an experience for people, regardless of the nature of their specific disabilities. It is for this reason that the Convention on the Rights of Persons with Disabilities addresses such issues in an inclusive and cross-disability manner. We are concerned that resolutions focused only on one specific disability may lead to such targeted responses that opportunities are missed to develop comprehensive, systemic solutions that could benefit broader populations. Rather, our preference remains to adopt disability-themed resolutions on issues of relevance to the entire disability community, and to be inclusive of persons with disabilities in other resolutions as appropriate.

It is also extraordinarily important, in this as in all resolutions, to be fully mindful of the language used in order to ensure that it is respectful of those individuals that are the focus of the resolution. We understand that certain terminology may be commonly used in medical and health-focused fora. However, in light of the paradigm shift catalyzed by the Convention on the Rights of Persons with Disabilities, we call upon delegations to ensure that we utilize language that embodies a human rights-focused approach to disability. In addition, we believe it important to note that there are many individuals with autism who proudly self-identify as autistic, and we recognize the important contributions that they make to society while re-committing ourselves to combating societal barriers that hinder their full enjoyment of human rights and inclusion in society.

As President Obama said last year on Autism Awareness Day, and I quote, "let us recommit to improving the lives of individuals and families impacted by ASDs and creating a world free from discrimination where all can achieve their fullest potential."

Thank you, Mr. President.


PRN: 2012/290