Autism_ A Mother's Story

March 9, 2001 -- -- Karen Siff spent two-and-a-half years implementing an intensive behavioral intervention technique known as ABA with her son Jake, who was diagnosed with pervasive developmental disorder when he was 2. She wrote a first-person account of her experience for ABCNEWS.com.

"Your 2-year-old toddler is more like a 15-month-old baby, at least developmentally."

That's what a child psychiatrist, two speech pathologists, a Ph.D. psychologist, an occupational therapist and a developmental pediatrician agreed upon after four weeks, seven visits and 12 phone calls. I watched as they put my son through extensive testing, questioning, coaxing, poking and prodding -- recording each move on hidden video cameras. In the end, they concluded that Jake had what's called PDDNOS -- Pervasive Developmental Disorder Not Otherwise Specified. That's what all the doctors said. Except one. The child psychiatrist told me he wanted to "give it to me straight."

"Your child has autism," he said matter-of-factly.

When I'd found my son lying face down on the driveway at his second birthday party, I stopped believing what our family pediatrician had been telling me over the past few months -- that I worried too much. The next week I took Jake to the first of many specialists.

Jake's diagnosis came a month after that birthday. I guess I should have felt relieved that my fears about Jake's development were not imagined. I didn't. The specialists tried to make me feel better by explaining that PDDNOS was a mild autistic spectrum disorder, with the emphasis on "mild." But that diagnosis provided little comfort to me as I looked at my silent son who could barely make eye contact with his mother. No matter what label the doctors gave his condition, the word autism resonated through my head. Autism meant my son had entered into a realm of hopelessness and withdrawal from reality. I'd seen in it in the movies, I'd read about it in books.

Initially, instead of dealing directly with Jake's diagnosis, I entered into what the doctors called the "denial" phase. The Tuesday that Jake was diagnosed, I called my parents from the doctor's office to tell them the news. The following day, I called them back to "untell" them -- saying I suspected the diagnosis was a mistake. Luckily for Jake, my denial phase only lasted one week. As I later learned, time was of the essence. The earlier we began his therapy -- the better his potential of recovery.

Jake developed normally until he was 17 months-old. He reached all of the typical developmental milestones -- he walked, talked and played just like the other kids his age. Gradually over the next few months, he stopped talking. He stopped playing. It was as if one by one, his circuit breakers began shutting down. My once energetic and spirited toddler was developing into a listless, disconnected boy.

Jake could barely feed himself. While his peers devoured chicken nuggets and french fries, I spoon-fed Jake as if he were an infant, scooping the Cheerios into his mouth and making "yummy" noises as the milk dribbled down his chin. I gently wiped his face after each bite. He screamed if the milk touched his hands or trickled inside his shirt.

Jake wanted to eat Cheerios in his plastic yellow bowl for breakfast, lunch and dinner but I wouldn't let him. I made pancakes in the shape of Mickey Mouse and rolled cheese into balls that I stacked like little snowmen. He grunted to tell me that these foods were not acceptable.

One week he ate only hot dogs. They had to be sliced into nine even pieces on his Winnie the Pooh plate and the ketchup could not touch the hot dog. But my husband, Franklin, didn't know the ketchup rule, and one night I came home to find a hysterical child lying on a red-splattered kitchen floor with his desperate father at his side trying to calm him down.

Once, my son ventured to try a bite of spaghetti. He seemed to like it. In my excitement, I went out and bought every kind of pasta. And he ate them, devouring the red, green, yellow tubes, shells and bowties faster than I could shovel them into his mouth. He just wouldn't touch them with his hands. The rubbery feel of the pasta against his skin sent him reeling. Once, a bowtie brushed against his hand and he grabbed the tray on his highchair and shook it so hard he tipped himself over.

I tried to comfort myself by reading parenting magazines that said a lot of 2-year-olds have eating issues. But when a typical child decides she wants bologna on white bread every day for lunch, even Dr. Spock deems it normal. When my kid did it, it was considered by the specialists to be "stereotypic autistic behavior." The magazines said that toddlers like to spin around and make silly noises. But when Jake did it, he was engaging in what his therapists call "self-stimulatory behavior."

Out of all of the doctors I consulted, the one I respected the most was the developmental pediatrician Cecilia McCarton. Her expertise in the world of childhood developmental disorders was matched only by her kindness. After thoroughly explaining Jake's diagnosis to me, she came around from behind her desk and gave me a hug.

Despite her honesty and compassion, when Dr. McCarton told me how many hours Jake would need for his therapy, I almost consulted someone else.

"Your son needs 40 hours of Applied Behavior Analysis a week," she told me. "Plus two half-hour sessions of speech and occupational therapy."