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Category Archives: Research and Data Collection
Newsweek Article
ASAN President Ari Ne’eman was profiled in Newsweek Magazine discussing the Autistic community’s concerns around genetic testing and the need for a new direction in autism advocacy....
Posted in ASAN in the News, Research and Data Collection, Self Advocacy and Representation
Tagged research, self advocacy
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Comments at May 4, 2009 IACC Meeting
Augmentative and Alternative Communication: Since communication difficulties are experienced by many, if not most, people on the autism spectrum, funding research in this area should be a high priority. Advances in communication technology, and the development of AAC options that are affordable, will have a practical application to the...
Posted in Research and Data Collection
Tagged IACC, research
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Comments at February 4, 2009 IACC Meeting
Shift in Focus Recommended: Research should address the domains measured by the World Health Organization Quality of Life Instrument. The research agenda should respect the wishes of autistic individuals and their families, many of whom have written in response to Requests for Information....
Posted in Research and Data Collection
Tagged IACC, research
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Comments at January 14, 2009 IACC Meeting
Causation and Cure Focus Excessive: These priorities are out of step with the needs and desires of the autistic community. In the year 2008, only approximately 1% of the NIMH autism research budget was allocated to services research....
Posted in Research and Data Collection
Tagged IACC, research
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Comments on Proposed New Jersey Autism Registry
Changes Needed in Autism Registry Proposal: The Division of Family Health Services has proposed new rules and amendments at N.J.A.C. 8:20 to establish a birth defects registry, which would include an autism registry and a severe neonatal jaundice registry. The Autistic Self Advocacy Network has several concerns about the...
Posted in Research and Data Collection
Tagged autism registry, privacy, stigma
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Comments at December 12, 2008 IACC Meeting
The IACC's mandate is broader than scientific research. Access to services and supports, safety improvements, and research across the lifespan are significant issues....
Posted in Research and Data Collection
Tagged IACC, research
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Comments at November 21, 2008 IACC Meeting
Expanding Focus on Whole Individual: While NIMH and the IACC are obviously not first and foremost service-delivery organizations, the goal of all scientific research into any disabling conditions should ultimately be the application of that research to real-life situations in ways that directly benefit the subjects of that research....
Posted in Research and Data Collection
Tagged IACC, research
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Joint Comment on the IACC Draft Strategic Plan 2008
The Autistic Self Advocacy Network and several other disability rights organizations submitted a joint comment calling for the inclusion of autistic adults in all aspects of IACC’s decision-making process, research topic selection, research design and research implementation....
Posted in Research and Data Collection
Tagged IACC, research
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IACC Services & Support Comments: Background & Talking Points
Input from Autistic Adults Needed: Public comments on autism services and support can help to shape the priorities of the Interagency Autism Coordinating Committee (IACC) in allocating research funds. ASAN has prepared background information and talking points for those who wish to comment....
Posted in Research and Data Collection
Tagged IACC, research, services, supports
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Comments at May 12, 2008 IACC Meeting
Advantages of Community-Based Participatory Research: With community-based research, members of the community being studied are full participants at every stage of the research process. Funding should be allocated to research that will have practical applications for autistic people and our families....
Posted in Research and Data Collection
Tagged IACC, research
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