Wednesday, May 4, 2016

Giving children with autism a voice

By Olivia Cahill

PLATTSBURGH, N.Y. – Picture the obnoxious coworker who seems to overact

every time there is a change in plan or schedule. Imagine your relative that seems to

fixate on what would seem to be insignificant details of a movie. Imagine the “weird kid”

in class that cannot seem to go into the bathroom alone because of the loud automatic

toilets. Now picture your reaction when you learn that your coworker, classmate, or

relative has autism spectrum disorder.

Autism is one of the fastest-growing developmental disorders in the U.S. and

affects 1 in 68 people in the country. According to Autism Speaks, the worlds leading

autism advocacy organization, autism spectrum disorders (ASD) are characterized by

social-interaction difficulties, communication challenges and a tendency to engage in

repetitive behaviors. But the biggest misconception is that each person with this diagnosis

is the same. Many believe that it is a cookie cutter diagnosis, but it ebbs and flows on a

spectrum from being high functioning vs. low functioning.

In Plattsburgh, there are several options for families and caretakers that aid people

with autism; the first is to get a diagnosis. The only way to truly receive aid is to have the

piece of paper certifying the diagnosis. That is where the North County Regional Center

for Autism Spectrum Disorders can help. One of six centers in New York State, the

government funded program can offer a detailed analysis of each patient through the

Center for Neurobehavioral Health. They also aid in school consultations, creating

behavior intervention plans, and can refer people to private local practitioners such as Dr.

Jeanne Ryan.

Project coordinator Jessica Matthews said, “The diagnosis is nothing to be scared

or ashamed of, anyone with the diagnosis becomes eligible for many services. It opens

the door to so many possibilities.”

Many parents and caretakers struggle with the diagnosis. “When I began my own

journey, I was clueless. You go through the stages of grief; the things you wish your child

could do might not be possible. I was overwhelmed and stressed until I gained more

knowledge about; once I reached that point, I was able to move forward. ” said Genie

Denton, Program Coordinator for the Autism Alliance.

The next step would be to gather information about the disorder. “Some people

think you deal with it when they are younger and they will grow out of it. That is not the

case, at any age the children need services. You can never stop learning. I give kudos to

the parents that keep educating themselves, that don’t shy away from the diagnosis and

keep their minds open to the possibilities for their children.” Matthews said.

NYS is consistently ranked in the top 10 areas for serving people with disabilities.

The Autism Alliance of Northeastern New York has a massive amount of knowledge on

the subject. They provide a book with a database of providers that is passed out to

schools, parents, or anyone that wants one to seek knowledge about autism. The book

aids in improving and enhancing the lives of people with autism, which goes in

accordance to their values. It began as a grassroots movement created by parents with

autistic children to raise funds in the community. Everything raised in donations goes

specifically to educational opportunities in Clinton, Essex and Franklin county


After gaining the knowledge about autism, enrolling a child or caretaker in the

local programs provided would be a helpful way to aid in managing the sometimes-

difficult behaviors of autism. The North County Regional Center for Autism Spectrum

Disorders coordinates tri-county events such as an eight-week parent skills workshop.

The Autism Alliance provides several grants to the community where any

organization such as a schools or day care can apply, as long as their program directly

impacts people with autism. In addition to the grants, the alliance helps fund programs

such as conferences for anyone who’s life has been impacted by autism, community

concerts, and even sensory films once a month at Cumberland 12.

Another resource would be the autism intervention program called Nexus. They

work on social skills to help children be as high functioning as possible. In doing so they

teach children how to apply social skills in different settings from going into schools and

having lunch time buddies that work with the children and their “typical” classmates to

peer networking. Everything is individualized because no two children have the same

issues. Through structured and unstructured activities, they help the children manage

their behaviors in a social setting. They also provide family training of the signs and

symptoms of autism and how to manage them.

Program coordinator for Nexus, Andrea Martino said, “The real issue is you have

to walk the line between their typical peers behaviors and allowing the children to have

their own set personalities.” Breana Syslo, volunteer for Nexus and president of Autism

Speaks U at SUNY Plattsburgh, said, “One behavioral management technique with one

student, may not work for another.”

Because the North Country is located near the Adirondacks, there are not a ton of

services in each area. “We have one child that has to drive forty-five minutes each

Saturday because there are no resources located close to his home.” Martino said.

However Plattsburgh seems to be the central hub for behavioral management programs.

There is also a program called MVP Kids. This sports league is for children ages

5 - 12; there is also MVP Teens for children ages thirteen and up. There are 6 sessions

per year and each one has a different sport to play from bowling to soccer to swimming.

The object of the program is to help prepare the children so that they can be integrated

into their own community sports teams. It helps with social skills, coping skills for when

they lose a game, and learning how to play the game.

Martino is also the assistant director for MVP kids. “It is all about contextual

learning - children with autism don’t typically generalize. If you teach them one skill,

they may not be able to apply it to several different situations.” Martino said.

Lastly, the best way to truly come to terms with autism is to get involved in the

community. “I feel strongly for advocating for people that need a voice.” Denton said. On

the SUNY Plattsburgh campus, Autism Speaks U held their annual color run on April 30.

To end autism awareness month, the Autism Alliance is hosting their autism awareness

walk on May 7 at the Clinton County Fairgrounds – giving plenty of opportunities for the

community to get out and volunteer or donate to the cause. “The best advice I can give to

anyone about autism is to keep an open mind; don’t jump to conclusions if you see

someone that is a little different.” Martino said.

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