We thought the best way to introduce ASAN to you would be to let you read a letter written by Ari Ne'eman.
Dear Artists for Charity:
Thank you for selecting the Autistic Self-Advocacy Network (ASAN) as your charity of choice for your upcoming activities. We appreciate your support and look forward to working with you to maximize its impact. Ive been asked by Kat Bashaw, an AfC organizer to write a brief letter talking about our activities and perspective and am happy to be able to communicate with you. ASAN is an all-volunteer organization of adults and youth on the autism spectrum. We have numerous chapters in various states across the country as well as in countries outside of the United States. Our aim is to empower autistic people across the lifespan to advocate for ourselves in public policy, media representation, research and all other aspects of autism policy and affairs. In keeping with our mission, our leadership (including myself) consists entirely of adults and youth on the autism spectrum, as does our board of directors.
Later in this letter, I will outline a few of the many areas in which we are working to improve service-delivery and education for adults and youth on the autism spectrum. However, just as important as our work improving services and supports is our advocacy to ensure that the perspective of self-advocates is well represented in the policymaking and media discussions of the autism spectrum. A common battle cry from the disability rights movement is, Nothing About Us, Without Us, and as an organization run by and for autistic people, we are concerned by the lack of inclusion of our voices in policymaking about us. As such, we have made one of the focuses of our advocacy the greater representation of autistic self-advocates throughout autism policy. ASAN activists participate in a wide variety of boards, commissions, advisory councils and public comments relating to autism and disability policy issues. Furthermore, our advocacy efforts have secured representation for self-advocates in multiple states on autism policymaking bodies advising legislatures and governors.
We also believe the perspectives of self-advocates must be heard in the context of research issues as well, and as such have been active in lobbying the federal Inter-Agency Autism Coordinating Committee (IACC), the entity charged with overseeing federal autism research funds, to include autistic adults in their decision-making and focus their efforts on service-delivery and education research that will positively impact our lives. Furthermore, through the Academic Autistic Spectrum Partnership In Research and Education (AASPIRE), weve put forward a bold new model for autism and disability-related research where self-advocates and researchers work in tandem throughout all parts of the research process, from the selection of the topic to the design and implementation of the research. As a result, more ethical, scientifically sound, socially relevant, and effective research can be undertaken, better serving the needs of the autistic community.
Over the course of our efforts, weve been involved in a number of types of activism, including systems change, advocacy and grassroots mobilization. Our efforts have included raising public outcry in response to a multi-million dollar ad campaign spreading misinformation about children with disabilities. In response to the NYU Child Study Centers Ransom Notes ads, we mobilized over twenty disability rights organizations from across the country and coordinated a response of thousands of people from around the world to protest the portrayal of children with disabilities as kidnap victims. To raise awareness of abuse against autistic students, we helped organize a national response to the voting out of six-year old Alex Barton, a student on the spectrum in Florida. We continue to work with Alexs mother, Melissa, as well as parents and self-advocates in Florida to block regulation that would enable teachers to utilize dangerous restraint against students in an abusive and unsupervised fashion. As members of the Alliance for the Prevention of Restraint, Aversive Interventions and Seclusion, we lobby against the use of abusive practices against students and adults with disabilities of all kinds. Our grassroots mobilization efforts have been effective in other areas, such as fighting against the forced institutionalization of autistic adolescents, responding to misinformation about autistic people in the media and calling public attention to the needs and rights of adults on the spectrum in areas like employment, housing and community living supports.
Through our advocacy arm, weve made one of our top priorities supporting greater opportunities for autistic adults to live in the community. Our activists contributed to the development of the nations first Medicaid Waiver for autistic adults in Pennsylvania, providing funding for community living supports for up to two hundred adults on the autism spectrum. Furthermore, ASAN representatives serve on the New Jersey Olmstead Implementation and Planning Advisory Council, providing advice and oversight to New Jerseys efforts to move adults with developmental disabilities of all kinds out of institutions and into the community. Through efforts such as these and others, we hope to promote a state of affairs where everyone will have the opportunity to live in the community and we can relegate the forced institutionalization of our people to the dustbin of history.
Our activism has extended into other arenas as well. Recently, representatives of our Maryland chapter contributed to the passage of a stronger bullying prevention law, addressing a crucial concern of many students on the spectrum. Our Speakers Bureau often works with universities and secondary schools to call attention to the importance of respecting neurological diversity, just as we have come to better respect racial, religious, gender and other types of diversity over the years. We also have worked closely with state government entities, relating to fields such as vocational rehabilitation and education, to craft policies for service-delivery that better fit the needs of autistic people across the lifespan.
Weve accomplished all this and much more in the span of two short years, relying on dedicated volunteers, grassroots mobilization and a belief in the importance of having our voices heard. This is one of our first efforts at raising funds to support our work and we truly appreciate that Artists for Charity has chosen to support us. I would be glad to answer any of your questions and I look forward to working with you all in the future to support our efforts to secure a better future for the autistic community. Thank you once again for standing with us in this important effort, as we aim to create a world that understands that disability is no less a civil rights issue than race, religion or sexual orientation and that accepts neurological diversity as equal to the many other forms of diversity that our society benefits from and celebrates.
Regards, Ari Ne'eman Founding President The Autistic Self Advocacy Network 1660 L Street, NW, Suite 700 Washington, DC 20036 http://www.autisticadvocacy.org
This article almost made me cry, because my brother is autistic and I want so much more for him than the world is currently willing to offer. Im really glad to see how people are getting out there to make a difference in their lives. Not only do people like my brother need the help and support, but everybody needs to be informed on what autism can really mean. It isn't just the crazy kid you send to the institute anymore, and the public needs to realize this.
Its so important to teach the public about autism. People always have the classic autism in mind, the little kids rocking back and forth, oblivious to the world, while there are more then one type of autism, and they differ so much from eachother.
I've read the whole letter (without being distracted, miraculously), and I would love to be a part of this. I have Aspergers on the Autistic Spectum myself, and I'll even contact my mom about this and see what she thinks.