I can assure you that no one knows the autism spectrum better than someone on it,
March 1, 2007 by Kristina Chew, PhD
Filed under Health
This past Monday, February 26th, Senate Bill 690 was approved by the New Jersey Senate Health and Human Services Committee; the bill has now been referred to the Senate Budget and Appropriations Committee. Senate Bill 690 establishes the Asperger’s Syndrome Pilot Initiative. Two of the provisions of the bill are as follows:
- The purpose of the initiative is to provide vocational, educational and social training services to persons with Asperger’s Syndrome, through community-based service sites, which offer these individuals appropriate support, guidance and education to enable them to: further their education, achieve gainful employment, develop meaningful friendships, and become broadly competent adults who are able to lead fulfilling lives.
- The initiative is to provide services, through an individualized approach to instruction and support for persons with Asperger’s Syndrome, which address a comprehensive range of support needs for these individuals, including, at a minimum: social skills training; social supports, including supported employment; housing supports; and psychiatric services for the treatment of Obsessive Compulsive Disorder and other neurological disorders.
Senate Bill 690 was sponsored by Senators Loretta Weinberg (District 37-Bergen) and Elaine Karcher (District 12-Mercer and Monmouth).
As Senate Bill 690 establishes an Initiative for individuals with Asperger’s Syndrome, the voices and views of those with AS must be heard and integrated. Ari Ne’eman is the President of the Autistic Self Advocacy Network, which is a non-profit organization created and run by those on the autism spectrum to advocate for their own interests. Ne’eman, a college student, delivered the following testimony at a Senate Hearing on Bill 690 last Monday and I reproduce the full text of his testimony below (I have put some sections in boldface for emphasis.)
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.
I would like to repeat:
“There is a large population – both diagnosed and undiagnosed – of adult Asperger’s Autistics and many of them need support.”
“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.”
The true voice of autism is “the autistic community, that of individuals actually on the spectrum.”
There will be Senate Hearings on five more autism-related bills next Monday, March 5.
“The true voice of autism is “the autistic community, that of individuals actually on the spectrum.”
That’s great.
And who speaks for those on the autism spectrum who can not speak at all? Surely not people with communication skills such as demonstrated by Ari Ne’eman. Surely he is not suggesting that parents of autistic children, whether they are still children or adults, should transfer their legal and moral obligations to speak on behalf of their children, who can not communicate for themselves, to someone who has such advanced communication skills. It seems strange that Ari Ne’emen would want to take back his right to speak for himself and then assert a right to speak on behalf of someone who has fundamentally different realities.
I have met Ari Ne’eman — with my son Charlie present — there are great differences in their skills (and ages, Ne’eman being in college) but there are some similarities; Ne’eman’s point about the difficulties in communication and in using language for an autistic person applies to many “strata” of those on the spectrum (in my opinion). It is important to work together, autistic persons, parents, professionals, as I think we can learn a lot from each other and help each other.
The purpose of the initiative is to provide vocational, educational and social training services to persons with Asperger’s Syndrome, …
When a law is written, it is usually interpreted to mean exactly what it says (especially when money is involved). Therefore this law would exclude Kristina’s Charlie, as well as my Buddy Boy, as neither carries a diagnosis of “Asperger’s Syndrome”.
It’s a shame that the law was not written to include alldisabled who need support services in the community.
The pilot program that the bill would establish is to be evaluated “no later than two years after the date that it commences operations” and I’m curious as to what might result from that.
Bill A4057 establishes a New Jersey Adults with Autism Task Force.
Bill S2558 requires candidates for teaching certificates and current teachers to receive instruction in autism awareness and methods of teaching students with autism.
All bill pertaining to autism in the 2006-2007 Legislative session can be found here.
“Surely he is not suggesting that parents of autistic children, whether they are still children or adults, should transfer their legal and moral obligations to speak on behalf of their children, who can not communicate for themselves, to someone who has such advanced communication skills.”
I can assure you, *noone* wants to take over the obligations of anyone else. You may not realize that there’s a sub-culture of autistic people – and we’re very concerned for each others welfare. I go to parent meetings all the time; the only thing I get out of it – and the only thing I want – is the joy of helping bring people together through understanding. Even with “good communication skills”, a person on the spectrum still has the thought patterns of an autistic person. Of course, every one’s different. All people are. But those of us who speak in language can provide translation clues for those who only speak a sensory language.
I am wondering who does make the dicisions for kids with Autism when they are adults. I have a 4 year old who is autistic/ but verbal, and will my husband and I always be in charge of his finances. When does a child with autism get s.s? Is it when they turn 18? Does it matter if they can work or if they need help or a guide to help them do a job. I am asked all the time, what do we expect out of our son? I never know how to answer this. I understand that these kids come to the awareness that they are different, and have complete awareness tothere surroundings, they just haandle things in there own way, or is this aspergers. I can not imagine yet, my son having the awareness of his dissability. He is so young. I hope for him to be able to express himself and have a relationship with the world and people in it. But I can not picture it. I wonder if they become sad, and yern to be different or they just accept it. I was born blind in one eye, and I never new anyone saw things different then me till I was in middle school. I never really effected me till I was older. I see the limitations of my dissablility more as an adult. I wonder if this will be my sons reality.—Your article has forced me to look ahead, I have been so busy with the now, I did not look so far in the future.
When a law is written, it is usually interpreted to mean exactly what it says (especially when money is involved). Therefore this law would exclude Kristina’s Charlie, as well as my Buddy Boy, as neither carries a diagnosis of “Asperger’s Syndrome”.
It’s a shame that the law was not written to include alldisabled who need support services in the community.
Club 166, I wholeheartedly agree. It is a shame that the bill did not include the widest possible group of individuals. My organization, the Autistic Self Advocacy Network (www.autisticadvocacy.org), is interested in advocating for the entirety of the autism spectrum, not just the Asperger’s or High-Functioning part. With that in mind, I have made clear in my conversations with legislators that further legislative action is needed. It would be my hope that extensive effort is put into support services for individuals at all points on the autism spectrum, with the ultimate goal of independent living, self-advocacy skills and self-determination for all. That is our goal and I want to make clear that we share a common vision of the future that can be.