Autism United’s goal is to bring together a wide cross section of groups that serve the autism community, identify pressing shared problems and solve them. We intend to focus on services that will be accessible to the entire community, and crucial research to find the causes, treatments and cures for autism.
On Long Island, New York, Autism United is bringing together advocacy groups, including ACHAMP, and the Long Island chapters of both the National Autism Association and the Autism Society of America with three of the largest service providers in New York, Lifespire, Family Residences and Essential Enterprises, Inc. and the Developmental Disabilities Institute, as well as the Long Island Autism Conference, which is one of the largest autism conferences in the US.
We have identified a need that affects the whole community: an easily accessible place to provide referrals, information and support, especially to the families of newly diagnosed disabled children. A common experience among many families is getting that crushing diagnosis and then being given nothing more than advice to find a good school or residential care facility. The soon to be created Harvey Weisenberg Center will offer much more than that, including information on therapies, programs, education, insurance and local service providers. The center will be housed at Family Residences and Essential Enterprises, Inc, in Old Bethpage which is a major service provider for disabled people on Long Island.
The center will be named in honor of Assemblymember Harvey Weisenberg who has been a leading outspoken advocate for people with autism and disabilities throughout his long career in Albany. Not only is he a forceful advocate, but he is also the father of a disabled adult son.
Research into the causes, treatments and a cure for autism remain woefully inadequate for the scope of the epidemic. Many promising lines of research remain unexplored for lack of funds. Autism United will take a step to correct that problem.
A key initial project will be an in depth study of the incidence of autism on Long Island across all age groups. All the data show that there is a huge increase in incidence. Yet the work that conclusively demonstrates that increase has yet to be done.
And there are significant gaps in the existing data. For example, the official data from the New York State Department of Education reports dozens of school districts on Long Island without a single student diagnosed with an autistic spectrum disorder. An accurate count of the number and distribution of people with autism is an essential first step to rational allocation of scarce public resources, not just on Long Island but nationally as well, and is an absolute necessity for strategic investment of research dollars.
Our goal is to replicate the Autism United model in communities across New York and the country: Working with local communities and existing groups and organizations to solve local needs and provide badly needed funds for promising but underfunded medical research.
