Autism Reported in High Numbers, but Manhattan Parents Still Grasp for Understanding
By Nicole Bode
DNAinfo Associate Editor
MANHATTAN — Peggy Becker’s son was diagnosed with a form of autism right before he turned two years old — and nearly a decade later, the Upper West Side mom is still struggling to learn everything she can about coping with the disorder.
It’s been a lonely, exhausting and expensive journey for the former lawyer, who gave up her job to devote herself full-time to navigating a thicket of legal, medical and emotional challenges harder than anything she had faced before.
But she’s made it through with support from family, friends and autism advocacy groups — a support network that some Manhattan parents of autistic children may still not know about.
“To find out that your kid is on the autism spectrum, there are not too many things worse than that, it’s really awful to have a child diagnosed with a disability,” said Becker, 48, a board member of the New York Metro chapter of the National Autism Association (NAANYC).
“I guess that’s why it’s really important not to just focus on your kid. It’s really important for parents to have support, psychologically," Becker said. "My husband and I went to couples therapy, and I go to see a shrink … all that taking care of yourself, I think, is so important because if you don’t take care of yourself you can’t really take care of your child.”
With the third highest number of reported cases of school-aged autism in the nation, New York is no stranger to the challenges that come with raising an autistic child.
There are no precise numbers for the incidence of autism in Manhattan. But an estimated one in 151 8 year olds in New York State were diagnosed with autism in 2008, according to statistics compiled by Thoughtful House, a Texas-based organization for research and treatment of developmental disabilities.
That's slightly lower than the one in 91 children nationwide diagnosed with autism, according to the Centers for Disease Control and Prevention. The rate is slightly higher for boys — with an estimated one in every 58 diagnosed.
Yet many local parents don’t take advantage of the resources in the city, leaving them isolated and headed for depression, or worse, as in the tragic case of Jude Michael Mirra, an 8-year-old severely autistic boy allegedly murdered by his mother Gigi Jordan in a luxury Midtown hotel Feb. 5, advocates said.
“This was a very tragic situation, and it highlights the tremendous stress and pressure on the parents of a child with autism, especially single parents, and it highlights the lack of available resources and support,” said Sabeeha Rehman, NAANYC president.
“What we try to do is to be a resource for parents of children with autism. We try to be that pillar of support for them by being with them and advocating with them,” Rehman added.
Becker’s son Daniel first set off her red flags when he hadn’t started walking on his own by 17 months. She took him to his pediatrician, who referred her to a neurologist.
After a brief visit, the neurologist slapped Daniel with a diagnosis of PDDNOS — or pervasive developmental delay, not otherwise specified - and sent him and Becker away with a slip of paper.
“The neurologist looked at him for a half hour and said, said ‘he has PDDNOS, it’s mild, he’ll be fine in a few years.’ It’s not fine. I don’t know why he thought that, maybe he just didn’t want to deal with the emotional aspect of it,” Becker said.
“(He) handed us a piece of paper and said call this number, he didn’t tell me what it was. I didn’t even know what PDDNOS was until I got home and Googled it,” she added.
With the help of her son’s physical and occupational and speech therapists, NYU’s Rusk Institute of Rehabilitation Medicine, and advocacy groups like NAANYC, Becker eventually found her footing in the autism world.
She got Daniel, now 11, into the Rebecca School in Kips Bay, a private school for children with autism where classrooms consist of 8 students and 4 teachers, she said.
She spends countless hours reading about autism on the Internet, learning about treatments that can’t hurt her son, but might help him, such as special diets and hormonal supplements. She slashes the family’s vacation time down to pay for Daniel’s therapy every day after school.
And she helps the autism association do outreach to other parents, in hopes of lending them support during the terrifying process.
But every year, Becker and her husband still butt up against a host of opposition — including a mandatory annual legal battle with the city’s Department of Education required to get Daniel’s private school tuition reimbursed.
That’s why she finds it so gratifying to work with the city’s chapter of the National Autism Association, where they offer free support groups and mentoring.
"As I have worked through this, I am in a better place, I am really gratified to hopefully help other parents get to the same place,” Becker said. “It is what it is. To spend your life being pissed off about it, it’s a very sad way to spend your life."
“I love my son. I wouldn’t trade him for anything,” she said. "He has made me a better person and I’m thankful to have him."