While a federal study has compiled figures on the autism rate in America, officials are concerned that New York State was left out of the equation. In response to this issue, the Autism Identification and Education Act of 2008 recently was introduced by New York State Assemblyman Jim Conte (R-Huntington Station).
By first identifying all children throughout New York who have autism - a developmental disorder that affects a child's ability to appropriately and effectively communicate - this new legislation aims to help fill in the gaps in services needed for children with autism, provide better training for school district personnel, and offer community organizations financial assistance to provide recreational programs for children with autism and respite for their caregivers.
According to the Centers for Disease Control, autism currently affects one in 150 children. A federal study that was done several years ago attempted to get a more accurate number of children with autism, explained Conte, however, New York State was not a part of that calculation.
"This new legislation will provide for a comprehensive study to identify children that are on the spectrum throughout New York State," said Conte. "Everyone is trying to find ways where we can help families and children and school districts who are caring and working with children with autism." Conte said that the study would be completed by a team from various agencies, including the New York State Health Department, the NYS Office of Mental Retardation and Developmental Disabilities and the NYS Education Department.
"It's hard to get funding for autism if you don't know how many people have autism on Long Island," said Christine Heeren, director of the Long Island Autism Conference. "We keep using the one in 150 number, but that is a national average. We could have one in 50 in Suffolk County for all we know. It's criminal that we don't know for sure. There are four boys on my block with autism alone. That's a rate of about one in 25. We should not be playing a guessing game with our children's lives."
The current data on the number of children with autism is insufficient, said John Gilmore, executive director of the Hicksville-based Autism United, a coalition of service providers and advocacy groups on Long Island and New York City. "You will find two school districts that are approximately the same size and are two miles apart and one may report eight times as many children with autism," he said.
In many cases, but not all, he added, "you really find out that higher income districts tend to have much higher autism rates than lower income districts, which is pretty evident from the statistics we get from the New York State Department of Education and we know the rates are going up, although we have no real accurate idea of how much."
According to Gilmore, without a more accurate count of the number of children with autism, it will continue to be challenging to meet their needs. "It is really impossible to make rational plans - affording the appropriate number of classrooms, hiring therapists, etc.," he explained. "All residential facilities have huge waiting lists. There is clearly an inadequate amount of services and support being provided and it is going to continue to be that way unless we get a better idea of how many children with autism there are."
After much dialogue with parents of children with autism, as well as community organizations that deal with children with developmental disabilities, Conte, who is a member of the New York State Assembly Republican Task Force on Autism, said it was apparent that the school districts require assistance in meeting the needs of autistic students.
"In talking to parents, I have seen that teachers aren't properly trained to deal with autism in general," Conte stated. "But more importantly, you have to know how to deal with that autistic child in particular as an individual - whether the child has high or low functioning autism."
Depending on what students' needs are, which may include anything from having sensory issues to food allergies, training is done more informally with school district personnel "and some do it better than others," he said. "Realize that the school building is not just the classroom teacher, not just the special education or inclusion class; it also includes the bus driver, school cafeteria personnel, and the custodians, who all have to be trained on how to interact with your child."
"I am a very strong supporter of any kind of help that we can give to children with autism and their parents, as well as community organizations, bus drivers and teachers, for example, who work with children who have autism," said NYS Assemblywoman Pat Eddington (WF-Medford). "I think some of the most important work we can do today is to learn more about autism and respect those children who have autism by being able to work with them so we can help them."
The legislation, said Conte, would provide grant money to all school districts so that they could hire individuals who are specifically trained to work with personnel within the school district and the child with autism in the beginning of the school year so that everyone would understand the particular needs of that child.
And finally, said Conte, the legislation would offer some grant money for community organizations to be able to provide for recreational activities and social networks during the summer. "A lot of [the] time, some of these children have a hard time interacting with their peers," he explained, "and it would help if we could get them onto the soccer field or baseball field or involved in other types of recreational activities."
Caring for a child with autism, said Conte, tends to put a lot of strain on the parents and siblings. "We want to be able to help families deal with that and we also want to make sure that the child gets educated to the best of their ability ... not just the reading and the writing but in dealing with total life circumstances because some of these children are going to be able to function and develop typically so we have to make sure they are given the tools they need to live and work in our community successfully," he noted. Ascertaining how many children there are with autism, Conte said, will help to better address the growing needs of children with autism and the community.
The Autism Identification and Education Act of 2008 currently is in the New York State Assembly's Education Committee, and senators from Long Island are being sought to sponsor the bill in the New York State Senate.