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Autistic Representation Sought in New Jersey

The following is testimony given at the New Jersey Legislature on Monday, March 5th, 2007 at the Assembly Health, Human Services, and Senior Citizens Committee. After the Committee session, ASAN President Ari Ne’eman and other advocates from a broad coalition of other groups met with Speaker of the Assembly Joseph Roberts (D-5) to inform him about the autism spectrum and answer questions.

Members of the Committee,

My name is Ari Ne’eman and I am President of the Autistic Self Advocacy Network (ASAN), and an individual on the autism spectrum myself. I’m here today speaking on behalf of ASAN, a new organization of individuals on the autism spectrum, advocating on behalf of our own interests and futures. As the Committee has a heavy agenda for today, I will try to be brief. ASAN would like to thank the committee members for their hard work in advancing a broad and far-reaching package of legislation to improve the situation of individuals on the autism spectrum in New Jersey.

We’d particularly like to thank the sponsors of the legislation introduced today, most notably A-4055 and A-4058, which establish requirements for teacher training and emergency personnel training in autism awareness. These two pieces of legislation, more than any other, represent vital steps to improving the situation of people on the spectrum in New Jersey. This legislation will help to lay the groundwork for advancing inclusion in our schools and our communities. As New Jersey currently holds a rate of segregated school placements three times the national average, this must be a top priority. ASAN will do whatever is necessary to support the initiatives created by this legislation and encourages the state agencies that will implement these programs to ensure that autistic adults are included as relevant voices in the training process. No one knows us better than we know ourselves. On behalf of ASAN, I enthusiastically encourage the Committee to adopt this legislation.

Unfortunately, ASAN can not in good conscience support another piece of legislation before the Committee today, A-4057, the bill establishing an Adults with Autism Task Force for New Jersey. This isn’t because such a body is not necessary – it is. In fact, just last week I spoke to the Senate Health and Human Services Committee on the need for more support for adults on the autism spectrum in New Jersey. Unfortunately, as it is currently constituted, the Task Force would not serve the interests of adults on the spectrum. There are two reasons for this. The first is that the proposed Task Force does not include any adults on the spectrum. As said previously, we know ourselves better than anyone else ever could. However experienced the many experts and advocates are about autism issues, we adults who are ourselves on the autism spectrum know the issues and needs that face our population better than anyone. To set policy on our futures without consultation and participation by autistic adults is ill-advised and inappropriate.

Furthermore, I regret to say that one of the organizations that is included on the Task Force is not well-suited to represent the interests of adults on the spectrum. Autism Speaks is an organization that, while well-intentioned, is focused on genetic research to eliminate the autism spectrum, not efforts to improve the lives of those on it. Furthermore, in the pursuit of that goal, the organization has engaged in many offensive and inappropriate tactics that have greatly offended adults on the autism spectrum. Through its fundraising campaigns, Autism Speaks uses disease-oriented imagery that work to spread fear. I have here a petition signed by over 750 adults on the spectrum, family members and other individuals protesting one of these ad campaigns. The petition is entitled “Autism Speaks: Don’t Speak For Me”. The petitioners are concerned that Autism Speaks is spreading misleading information and imagery that may be unintentionally contributing to the rash of pseudo-science and lack of respect for human life that has been so prevalent in the discourse on autism lately.

On behalf of ASAN, I encourage you to table A-4057 for the moment and reintroduce it after addressing the two issues that I have mentioned previously, namely the lack of inclusion on the Task Force of autistic adults and the presence of a nominee on the recommendation of Autism Speaks. Doing so will serve the interests of individuals on the spectrum in New Jersey and ensure that the legislation that ultimately passes is best suited to the fine intentions that are behind it. Thank you for your time.

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