Press Release Opposing Autism Legislation: ASAN has issued a press release stating that an extension of the Combating Autism Act would lock in place an unacceptable status quo without services, without consideration of the needs of adults and without inclusion of self-advocates. We oppose extending the act without needed program reforms.
ACTION ALERT: Stop Extension of Flawed Autism Policy. Congress is considering legislation to extend the Combating Autism Act, which fails to provide for services and was passed without the involvement of self-advocates, for three more years. Contact your Senators today to oppose re-authorization without needed changes!
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.
Collaborative Research Project: A gateway for research committed to inclusion, respect, accessibility, and community relevance, the AASPIRE Gateway Project is recruiting participants with and without disabilities and participants on the autistic spectrum.
ASAN has issued a statement commenting on the AFAA report by Autism Speaks and several other organizations, which discusses adult supports and services.
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…
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 lives of people on the autism spectrum, throughout the entire lifespan.
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.
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.
