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Autism Rate Rises 28 Percent in NYC, but Getting Help Remains a Struggle

Colin, right, is autistic, but his fraternal twin brother Martin is not.
Colin, right, is autistic, but his fraternal twin brother Martin is not.
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Michael McWatters

MANHATTAN — Celeste Smith always knew there was something different about her first-born son.

He rarely smiled and, at 22 months old, the only words he spoke were "car" and "mommy." He repeated the words over and over again.

Smith, a nurse who lives in Park Slope, tried to convince herself that her son merely had a speech delay — until his developmental pediatrician uttered the word that changed everything: autism.

"They dropped the bomb, and at first you're just floored," Smith, 33, recalled last week, more than a year later.

"Then you go through the entire grieving process that goes along with getting that kind of news."

Every year, more and more New Yorkers are receiving an autism diagnosis just like Smith's son, mirroring a national trend that shows no sign of slowing.

Four-year-old Grace, in her mother Renee Tang Kong's arms, does not speak.
Four-year-old Grace, in her mother Renee Tang Kong's arms, does not speak.
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Grace Tang Kong

Monday is World Autism Day. The Empire State Building will light up blue as part of a global Autism Speaks campaign and April is being recognized as National Autism Awareness Month.

But so many New York families are already all too aware of autism, a disability that hinders social interaction and can severely impair language.

Their numbers are growing at an alarming rate.  

Between 2009 and 2011, New York City saw a staggering nearly 28 percent increase in the number of autistic students between the ages of 3 and 21, Department of Education figures show. By the end of 2011, about 1 in 110 public school students in kindergarten through 12th grade had been diagnosed with autism, the city found.

The numbers are in line with the much-discussed announcement last week that 1 in 88 children across the United States had been diagnosed with an autism spectrum disorder by the time they turned 8-years-old — a staggering 78 percent increase compared to six years ago.

Among boys, the incidence of autism is even higher, with 1 in 56 diagnosed by the time they turn 8, the Centers for Disease Control and Prevention found in the 2008 study, which covered 14 states and was released last week.  

The new numbers did not surprise the New York City therapists and school leaders who deal with autism every single day.

"I've seen a tremendous, exponential increase in the number of kids on the spectrum," said Mindi Messinger, who has more than 30 years of experience working with developmentally delayed children.

"It's unbelievable."

In just the past year, Messinger, educational director at the Comprehensive Kids Developmental School on the Lower East Side, saw the number of children at the school who were on the autism spectrum skyrocket, from just one or two last school year to more than 40 this year.

In part, the rise was because the school hired a staff member to perform applied behavior analysis (ABA) therapy, which has been effective in treating autism.

Children with autism now make up more than half of the small preschool's student body, and on school tours this spring, nearly two-thirds of the prospective families had a child with autism, Messinger said.

Experts are still debating the cause of the dramatic national increase in the incidence of the disorder, but many believe it is some combination of greater awareness, broader diagnostic standards and an actual increase in the number of children affected.

"There is better diagnosis [now], but I don't think that accounts for all of the rise," said Gil Tippy, clinical director at the Rebecca School for children with autism in Murray Hill, which has more than doubled in size since it opened six years ago.

"There are many more kids who meet the diagnostic criteria now," Tippy continued. "It isn't just that pediatricians are more aware. There are many more kids."

Whatever the reason for the increase, the fact remains that the number of  children on the spectrum in New York City is growing rapidly — and services for affected families have not always kept pace.

Stefanie Zadravec, a Ditmas Park resident whose 3-year-old son Colin was diagnosed with autism in September, said it took her five months and hours of meetings and phone calls to get Colin the therapies he needs.

"There simply aren't enough resources and services in place to support these children and to support families who have to fight tooth and nail to get their children an appropriate education," said Zadravec, a playwright.  

To make matters even more complicated, Colin also has a rare lung disease and must stay connected to an oxygen tank, which led some special needs preschools to turn him down, said Michael McWatters, Zadravec's husband and Colin's father.

Trying to get Colin into preschool was a "mind-boggling" experience, McWatters said, but Colin finally received a spot for next fall in YAI Network's William O'Connor Midwood School in Brooklyn.

"You really do feel like you're having to do battle," McWatters said.

"It's a full-time job…just making sure you're staying on top of it…. I definitely don’t think there are even remotely the necessary support or services available to families who are dealing with it."

The YAI program ends in spring 2014, but Zadravec and McWatters have already turned their attention to how they plan to cope with the Department of Education's notoriously difficult "Turning 5" process for placing incoming special needs kindergartners.

The process, which entails negotiating with the DOE over proper placement of special-needs students, would begin in early 2014, and would include meetings, evaluations and, in the worst case scenario, a legal battle, Zadravec said.

It's such a daunting process, the pair are seriously considering moving out of the city to avoid it entirely, she said.

Crystal Alfano, a Dyker Heights resident whose two young children are both on the autism spectrum, used the word "agonizing" to describe the ordeal she is going through to get her eldest child, 5-year-old William, into kindergarten.

Alfano believes that William — who can already tell time but gets overwhelmed in large groups — would thrive in one of the city's Nest programs, small scale inclusionary clusters for special needs students alongside students who are not on the spectrum.

The programs are located inside public schools across the city, and place four children with autism spectrum disorders and eight typically developing children into a classroom with two teachers.

The city has opened Nest programs at 23 schools since 2003, serving more than 500 children, but Alfano said she was told that there are just eight available seats in kindergarten Nest programs for Districts 21 and 20, where she lives.

While Alfano, 29, waits to find out if William has been accepted to a Nest program, she must decide whether to pay deposits at the expensive private schools that have already accepted him.

Alfano is a substitute teacher and her husband is underemployed, so finances are tight. The family must also reserve some resources for 3-year-old Sofia, who has also been diagnosed with autism.

"It's a hard process," Alfano said. " If [the Nest program] doesn't work, I don't know what we're going to do."

As parents wrangle with the system to get services for their children, they also go through a much quieter, more private struggle over their hopes and expectations for their children.

Renee Tang Kong, 43, an Elmhurst resident, said it took months to accept that her daughter Grace, who stopped speaking shortly after she turned 2, was on the spectrum.

"It's devastating," Kong said. "You go from thinking about which college she's going to go to, to wondering if she's going to make it to kindergarten."

Grace, now 4-years-old and a student at the Lower East Side's Comprehensive Kids Developmental School, is not like other children. While her peers play, she prefers to sit facing a wall. While many toddlers fix their affections on a stuffed animal or blanket, Grace ignores soft toys but sometimes picks up a can of soup and refuses to let it go, her mother said.

Grace is also a daring climber who loves clambering up on tables, and she is an affectionate daughter who likes being near her mother. She still does not talk, aside from repeating lyrics or other phrases she's heard in a rapid singsong voice. Sometimes when she cries, Kong has no way of knowing what's wrong.

"I worry that she's going to be lonely when she grows up," Kong said. "But I love my daughter so much. I don't have any regrets. I love her the way she is."

With reporting by Mary Johnson.