NORTH BRUNSWICK, N.J. (WPIX)—
"He was very kinda of normal and all of a sudden he didn't answer to his name, and slowly everything sort of went downhill," said mother Darlene Heins as she recounted when she first saw signs of autism in her son Christopher.Any parent with an autistic child could identify with Heins' story -- one she says she thinks about everyday.
"It was I have to say the worst day of my life when I was told that my son would probably never talk," she said. "When you have a baby you dream of him being a doctor or a lawyer or you just picture scenarios in your head and I couldn't go past him being 3 years old."
Diagnosed with autism at 18 months, Christopher began early intervention with a number of therapists and doctors who taught him the basics of life - from eating to simply sitting down. Now at 15-years-old, he's entitled to a variety of special services that range from speech therapy to social skills training, all helping him lead a close to normal life. However his mother learned early on that getting these services proved to be more of a treasure hunt than anything.
"There's got to be a way for parents to know without having to ask without having to fight for it," she said. "It needs to be offered to them because when your child first gets diagnosed you're lost."
Christopher is just one of many in a growing population who is in dire need of special services that some families don't even know exist. With statistics suggesting that autism cases have been on the rise over the past decade, the need for these resources will ultimately surpass what's available to them.
"We are in no way ready to accommodate this growing community," said Dr. Charles Cartwright of the YAI Network, a group of not-for-profit agencies that provides services for individuals with developmental and learning disabilities. According to Dr. Cartwright, these vital services become more scarce especially after a child moves into adulthood and "ages-out" of the system.
"These families are having tremendous difficulties accessing these services. Whether it be day services, whether it be assisted work programs, whether it be residential services and they are sort of crying out for who do I go to? Who is going to assist me? Who is going to make it easy for me to have access to care services for my adult child."
Sarah Haynes, who receives services through YAI, knows all too well the difficulties behind finding resources to help her two autistic adult twins. At 40-years-old, sons Bobby and Billy still find themselves on waiting lists to receive services that are already inundated.
"You are on your own to try to find these places and you run all over and make phone calls around New York City," Haynes explains. "And then when you get there, there is no room because it is so limited."
Although organizations like YAI are leading the charge to help disabled individuals and their families, it will soon be an out-of-control scenario as the community of autistic adults is slated to explode in the next few years making this long neglected community harder to ignore.
"We all have the right as individuals and in no way should people with autism and developmental disabilities be set aside and the expectation that they should have any less then what we have," Dr. Cartwright told PIX News.
As the dwindling of services continues to be a stark reality for many families, Heins - who prides herself as being an autism advocate - says garnering pity is the last thing on her mind.
"If you are a parent, you would do anything you can for your child I would hope. You would try to make your child as happy as possible and that's really all what we're trying to do," she said. "So don't pity people, its actually very annoying and its very hurtful. And i don't want pity. i like help. Id like strength and id like more services for my children. Not pity."
Learn more about the services available through the YAI Network.
