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Testimony on Autism to the New Jersey Legislature

Chairman Vitale,
Vice Chairman Karcher,

Honorable Members of the Committee,

Thank you for this opportunity to share my views on Senate Bill 690, establishing an Asperger’s Syndrome Pilot Initiative. My name is Ari Ne’eman and I am here today in my capacity as President of the Autistic Self Advocacy Network. The Autistic Self Advocacy Network is a new non-profit organization created and operated by individuals on the autism spectrum to advocate for our own interests. Our advocacy work has extended into a variety of public policy issues, including education, support services and the public perception of the autism spectrum, including Asperger’s.

Asperger’s Autism is characterized by difficulties in interpreting social interactions. When neurologically typical people communicate, what is being said is just the tip of the iceberg. Vast amounts of unspoken communication occurs as a result of nonverbal cues, intonations, contexts and other subtle forms of talking “between the lines”. My people, Asperger’s Autistics, do not naturally pick up on these more subtle forms of communication. The ability to understand neurologically typical social skills can be learnt, but it is like learning any foreign language – the process is long, difficult and one always prefers communicating in ones mother tongue. At the same time, the social difficulties that we face are not the totality of our neurology. Asperger’s Autistics typically display high levels of intellectual ability in specific areas of interest, particularly (though not always) those related to categorization-heavy fields like mathematics or engineering. It is because of this that many Asperger’s Autistics have found success in fields like computer science, engineering and similar fields. It is also because of this that today many historians believe that some of the great but eccentric minds of the past, including Einstein, Newton and Jefferson, may have been Asperger’s Autistics.

As President of ASAN and as an Asperger’s Autistic myself, it is my pleasure to be here to endorse Senate Bill 690 on behalf of ASAN. Too often, when people on the spectrum like myself are discussed, two unforgivable mistakes are made. These are mistakes that I dare say are made by almost every single person, however well-intentioned, in the autism community, even many good people who I deeply respect and who ASAN works with regularly, as well as quite a few with whom we, out of principle, do not. The first is assuming that when we talk about Asperger’s, we’re talking just about children. Because of the relatively recent discovery of the Asperger’s diagnosis, which was recognized in this country only in 1994, and because of the fact that most of the people talking publicly about Asperger’s right now are parents, that is an understandable error – but it is still one that we have to rectify. Asperger’s, and the autism spectrum more generally, are genetic and our recent recognition of them doesn’t mean that they did not exist before this generation. There is a large population – both diagnosed and undiagnosed – of adult Asperger’s Autistics and many of them need support. While some hold jobs and are largely successfully integrated into society, a significant percentage of them are not. Yet they could be if the proper support mechanisms were developed. Establishing an Asperger’s Syndrome Pilot Initiative of the type proposed in Senate Bill 690 would go a long way to tapping the great potential of the many individuals of my neurology who are not yet able to successfully integrate into neurologically typical society.

The second mistake of the two I mentioned earlier is even more grave: forgetting to take into account the voices of individuals on the autism spectrum ourselves. This is not just an issue when discussing Asperger’s, but one that is a problem when talking about the autism spectrum as a whole. For minorities in the area of race and religion, being consulted before steps are taken that effect their community is a given. However, it is the sad fact that when policy towards New Jersey’s citizens on the autism spectrum is being formulated it is exceedingly rare that an autistic of any kind has a seat at the table.

Members of the Committee, it is my pleasure here today to endorse legislation that will begin the process of addressing the needs of adults on the spectrum and, by my presence and my voice, taking a significant but incomplete step towards rectifying the lack of representation for people on the spectrum in public policy discussion. Not until our voices are heard at the beginning of the formulation of legislation will that process even approach completion. The legislation here today is an excellent first step towards fulfilling the needs of people on the spectrum, but there are many other areas that need to be addressed. Asperger’s Autistics still face discrimination from state agencies, still do not receive accurate information about their neurology and still suffer while the agenda on our fate is set by others. These are problems that will only be fixed once our voices are recognized and our community – the autistic community, that of individuals actually on the spectrum – is recognized as the true voice of autism.

Still, I urge you to pass Senate Bill 690, not because it is complete in addressing the needs of our community, but because it provides a start that until its introduction did not exist. Furthermore, it is the intention of the Autistic Self Advocacy Network to, provided that this legislation passes, offer to advise the Department of Human Services on how best to serve New Jersey’s citizens on the autism spectrum. Our organization includes many individuals proficient in disability policy in areas ranging from adult support services to educational inclusion. In addition, we also know our own needs better than anyone else. I can assure you that no one knows the autism spectrum better than someone on it, and I hope the Department of Human Services and other bodies that serve individuals on the autism spectrum in New Jersey will agree to work with us to create a better future. By doing so we can take steps towards building a truly inclusive State where neurological diversity is accepted and celebrated. From such a situation, we all would benefit.

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