Comments at November 30, 2007 IACC Meeting

Members of the Committee,

Thank you for this opportunity to give comment on the IACC’s important work. My name is Ari Ne’eman and I am here today in my capacity as the President of the Autistic Self Advocacy Network (ASAN), a volunteer non-profit organization run by and for adults and youth on the autism spectrum. ASAN works to promote the autistic culture movement and other opportunities for individuals on the autism spectrum to interact with each other as well as work to improve the representation of the autistic community in public policy deliberations about autism and disability affairs.

As an individual on the autism spectrum myself – I am an Asperger’s autistic – I am heartened to see the interest and resources being directed towards the autism spectrum as of late. Unfortunately, as positive as the strong awareness campaign about the autism spectrum could be, it is counterproductive without an equally strong commitment to autism acceptance. Upon the passage of the legislation authorizing this committee – the Combating Autism Act – a prominent parent-lobbyist announced “a federal declaration of war on the epidemic of autism.” The problems with that statement are many. A “War on Autism” approach is not in the interests of people on the spectrum. It offends and alienates the autistic community. This is the community of verbal and nonverbal individuals on the autism spectrum – distinguishable from the autism community of the parents, professionals and others who often claim to speak on our behalf. We are usually the last to be consulted on autism policy; the autistic community should be the first to have input into policymaking about our own futures.

While the rhetoric surrounding autism has focused on the idea of cure, many people on the autism spectrum are not interested in pursuing as a goal making autistic individuals normal. Instead, we agree with the opening language of the proposed Expanding Promise for Individuals with Autism Act, which states “Autism is a natural part of the human experience.” This is NOT to deny in any way the very real and pressing hardships placed on families and people on the autism spectrum. Instead, it is to promote research that will truly do something about it. We encourage the IACC to re-focus its research exclusively on how to improve the quality of life, communication, independent living and educational opportunities of America’s many autistic citizens.

The promising research leads are already present and are not being followed up on, due to a misguided belief that the goal behind autism research and advocacy should be to, “make autism a word that we only see in the history books.” The Autistic Self Advocacy Network encourages the IACC to make the focus of the federal research agenda Augmentative and Assistive Communication (AAC) technology, positive behavioral supports, restraint reduction methods, adult supports, educational inclusion, employment and independent living services and other possibilities that provide tangible improvements in our lives. If one-tenth of the attention and funding now focused on finding a cure was put towards the promising possibilities in assistive communication technology, many people on the autism spectrum today viewed as “low-functioning” would be communicating successfully today. [Update, July 2009: ASAN has revised its policy and does not advocate the use of positive behavioral support (PBS) programs.]

I applaud the IACC for beginning to fulfill its moral obligation to have autistic representation on the Committee. The inclusion of Stephen Shore, a respected self-advocate with a long history of contributions to the autistic community, is a great first step. At the same time, I note that there remains a distinct under-representation of autistic representatives on IACC as compared to the number of parent and professional organizations and individuals represented. I hope to see the inclusion of autistic self-advocate organizations in the near future, such as Autism Network International and the Autistic Self Advocacy Network.

We must also express concern over one of the public members appointed: Allison Tepper Singer of Autism Speaks. Ms. Singer’s comments in the fundraising video Autism Every Day where she discusses refraining from driving her daughter off the George Washington Bridge, “only because of…the fact that I have another child.” sparked massive outrage throughout both the autistic self-advocate and the parent community. It should be noted that four days after the release of said film a mother did in fact kill her autistic daughter and that there has been a notable increase in such murders in recent years. Many self-advocates and parents believe Autism Speaks to be morally complicit in these murders through its continued dehumanizing advertising, encouraging a lesser value for autistic life.

We live in a society where the lives and opinions of individuals with disabilities are viewed as less valuable and less deserving of basic human respect than those of other citizens. The IACC must break with that mindset and we encourage the Committee to pursue a new direction in autism research to maximize quality of life and opportunity for every person on the autism spectrum, not by insisting that we attempt to become what we are not but by recognizing that – with the right services, education, and a supportive environment – we can succeed as we are.