This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America. At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year: 1) Supporting and Empowering autistic adults, 2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and 3) Balancing the Research Agenda in Support of Quality of Life. You can read our recommendations to the new Administration on our website and we encourage you to post them on your blogs, listservs and elsewhere.
Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community.
Nothing About Us, Without Us!
Regards, Ari Ne'emanPresidentThe Autistic Self Advocacy Network1660 L Street, NW, Suite 700Washington, DC 20036http://www.autisticadvocacy.org732.763.5530
Details of ASAN's recommendations can be found here.
Here is a brief excerpt:
Research that focuses on discovering and eliminating autism both enters the dangerous and unethical realm of eugenics and avoids addressing the social barriers that autistic people face that prevent quality of life and full participation and inclusion in society at large. Balancing the autism research agenda to focus on quality of life will pay dividends by providing evidence on the most effective methods of delivering services and providing for an effective education across the lifespan.
ASAN goes on to suggest that no less than a third of federal funding for autism research be allocated to services-based research.
The inclusion of ASAN in this discussion represents a big step in the right direction. A common myth about neurodiversity is that autistic self-advocates who support ideas like acceptance would prefer to see an end to autism research. That isn't the case. It's about resources. While huge sums of money are poured into finding the cause of autism, there are many autistic people who might benefit from services that money could buy. There are autistic adults who need help with employment, education, transportation, activities of daily living. Autistic children need Free and Appropriate Public Education. Adults and children on the spectrum need access to Augmentative and Alternative Communication devices. All of us need the opportunity to be fully included in the communities we live in. All of us need doctors and police officers who are properly educated about autism.
None of these needs are addressed by "Walk for Autism" events or public service announcements decrying the "horrors" of autism. But they are addressed realistically through the inclusion of autistic adults in formulating policy.
This is truly a hopeful start to the New Year.