Autism research often focuses on what non-autistic people think is important. While self-advocates have been calling for more research that could materially improve the lives…
These comments are available as a PDF here. Thank you for the opportunity to submit written comments on the IACC’s public meeting on October 13th…
Today, the new membership of the Interagency Autism Coordinating Committee (IACC) was announced. The IACC is a committee that advises the federal government on autism…
These comments are available as a PDF here. Thank you for the opportunity to submit written comments. The Autistic Self Advocacy Network (ASAN) is pleased that,…
These comments are available as a PDF here. Thank you for the opportunity to submit written comments. The Autistic Self Advocacy Network, in light of…
These comments are available as a PDF here. Thank you for the opportunity to submit written comments. The Autistic Self Advocacy Network (ASAN) continues to…
On July 10th, the federal government’s Office of Autism Research Coordination (OARC) released a new report analyzing the distribution of autism research dollars in 2010….
FOR IMMEDIATE RELEASE: ASAN expresses concern regarding new HHS report on autism research New report uses “creative accounting” to reflect increase in services-research; confirms persistent…
Those researchers who work in close consultation with, and call on the expertise of, those of us living on the autism spectrum, in areas of development, interpretation, implementation, and evaluation, are the researchers who will be most likely to make advances that will directly impact the lives of autistic people in a positive way.
The Autistic Self Advocacy Network applauds HHS Secretary Kathleen Sebelius’ appointment of ASAN President Ari Ne’eman to the Interagency Autism Coordinating Committee (IACC), a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism.
The use of the term, and concept of “severity,” is questionable for several reasons. First, “severity” is often contextual, over both time and other things like situation and location. What is being looked at when using the “severity” criterion is how “observable” the autistic characteristic is. Whether or not a characteristic is observable and to what degree does not necessarily correlate with other aspects of the person. Again, the focus needs to be on improving the quality of life and not on reducing autistic traits.
Information about Services Needed: Research into causes, biomarkers, prevention, etc. will not help people who are alive today and need evidence-based information about services and supports. Recent research and initiatives in the United Kingdom can provide a model for services-oriented research and also research into adult issues.
