By SHERRI LONON

While most toddlers relish hugs and kisses, stop on a dime when their name is spoken, and call for their mommies and daddies when they want out of their cribs, Emily Proctor does not.

But, the little girl with the wispy, light-brown curls can spell about 100 words and label just about anything. Give her a puzzle, and she’s likely to figure it out.

Emily Proctor has been diagnosed with PDD-NOS, or pervasive developmental disorder not otherwise specified. In short, it means Emily is likely to have one form of autism or another. This condition of unknown origin, with no known cure, strikes about one in 166 children in America today, according to figures presented by Autism Speaks, a nonprofit organization founded by NBC chief executive officer Bob Wright and his wife, Suzanne. The agency works to raise money and awareness for the fight against autism with a strong emphasis on funding research.

The neurobiological condition is complicated. So complicated, in fact, no two children with autism present symptoms in exactly the same way. Emily’s case is unique, as are all cases of autism.

That’s why Emily’s parents, Rob and Cyndi Proctor, are getting involved in the inaugural Tampa Walk For Autism Research Nov. 11.

“No one knows what causes autism,” said Rob Proctor. “That’s why we need to do the walk and to research it. I don’t want other parents to go through this.”

The Proctors’ little girl was diagnosed two days before her second birthday. The first signs of a problem showed up months before. At her 12-month checkup, for example, Emily failed to reach many of the developmental milestones most babies attain, said Cyndi.

Since Emily suffered from chronic ear and sinus infections, it was thought this could be the root of the problem, Cyndi said.

Then at 18 months, she hit “rock bottom,” Cyndi said. “It was almost like there was nothing there. She just completely withdrew.”

Emily would learn words and then lose them. She wanted books read in a certain way, things put up in the same manner every time, songs sung to a particular cadence. “You couldn’t play with her,” Cyndi recalled.

The couple, who lives in the Carrollwood area, took their daughter to several doctors with varying results and then watched a television program that featured an autistic child. At that point, they couldn’t deny there was something more wrong with Emily than chronic infections, said Rob. “We knew there was something really happening,” he said. Emily was taken to another specialist and received her diagnosis.

Since then, Emily’s undergone a host of early intervention programs to help her develop better adaptation and social skills. She’s learning to tolerate eye contact, socialize more and even is more accepting of physical contact such as hugs and snuggles. She will even, on occasion, share toys with her younger sister, Haley, 18 months. She still likes things done in a particular way, and the threat of a “meltdown,” which is much more severe than a typical toddler temper tantrum, is always on the horizon, the couple said.

“She’s trying to establish an order in her world,” Rob said.

What exactly the future will hold for Emily, the Proctors do not know. They believe Emily will fall in the mild range of the condition, but said only time will tell for sure. They also believe that early intervention therapy will play a big role in how well Emily adjusts to the world outside their neatly arranged home.

As they wait for the future to unfold, the Proctors don’t intend to sit by and do nothing. They are committed to making a difference, they said.

To that end, the Proctors have signed up to take part in the first-ever Tampa Walk for Autism Research Nov. 11 at the Museum of Science & Industry, 4801 E. Fowler Ave.
They have Web pages for Emily set up through Autism Speaks where supporters can help sponsor their effort. The site is accessible from the http://www.autismspeaks.org main page by clicking on “Donate,” and following the prompts to the Tampa walk’s own page and its participant listings.

Both Rob and Cyndi intend to walk for the cause.

Making The Walk A Success
As a mother of a son with autism and a therapist, Helyn Moore of Brandon knows firsthand the importance of raising not only money for research, but also awareness about the condition. The walk, in particular, is near and dear to her heart, she said. So much so, she’s serving as the volunteer chairwoman for the event.

Pointing to figures of recent diagnoses that put autism in the range of one child in every 166 born overall and one out of every 104 boys, Moore calls the condition an epidemic. It’s her hope the Tampa walk and other similar events get the word out that help is needed to tackle this problem.

Although many participants in the walk are impacted by autism on a daily basis, anyone is welcome to come out and support the event, she said. “At the rate we’re going right now, statistically you will know somebody (with autism),” she said.

The goal for the walk is $100,000, a figure Moore hopes to exceed. So far, about 2,000 people are expected, she said.

Fighting for research and assistance for families is a passion for Moore. “I don’t anticipate they’re going to find a cure for this for my son (Michael),” she said. “My hope is that they will discover things to improve the quality of his life.”

Finding a cause and a cure, however, are the ultimate goals. “I don’t want to be sitting, wondering if my grandchildren are going to have autism,” she said. “I’ve given enough to autism. We need to find out what’s doing this and stop it. It all comes down to research.”

Moore provides autism patients with specialized therapy to help them catch up where they’re lacking developmentally. Further information can be found on her Web site at http://www.rdcconnection.com.

The walk itself begins with a check in at 9 a.m. It starts at 10. The event will feature access to MOSI, the walk, clowns and much more, she said. “We would love to have everyone come out and support the walk,” she said. “It’s going to be a fabulous day.”

To learn more about autism, the walk and the early warning signs of the condition, visit http://www.autismspeaks.org.