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."
40 Hours A Week
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."
"But he's only 2! He's still a baby." I hugged Jake closer to me as he sat on my lap in the office.
"The sooner you begin his therapy the better. You're fortunate you caught him at such a young age."
Dr. McCarton went on to explain about brain plasticity, and the brain's potential to make new connections if proper therapy is introduced.
"The only therapy that has been scientifically proven to have success with children like Jake is Applied Behavior Analysis, or ABA It's similar to behavior modification. When your child demonstrates an appropriate behavior, he gets rewarded. When he demonstrates an inappropriate behavior, he doesn't get punished; instead, the behavior is ignored, or he's taught to do something more appropriate. Recent studies show that with intensive one-on-one ABA therapy between a therapist and a child, 40 hours a week, children can actually both regain skills they lost and continue learning."
"But will he ever speak?"
"We don't know that yet."
"Will he ever be able to interact -- to play with other kids?"
"We don't know that yet either."
There were a million other questions I wanted to ask her but I was afraid of her responses. When I left the office that day and made it to the parking lot, the first thing I did was sit behind the steering wheel and cry. I glanced up at my son in the rear view mirror. Jake gazed at the windshield.
By the time I got home, I wasted no time beginning my own research. It's not that I didn't believe Dr. McCarton, it's just that I wanted to be 100 percent sure we were making the right decision for our son.
I spent my days calling doctors, parents of children with autism, special education schools, outreach programs, organizations for autism, our local county health officials and enrolling in autism conferences. I'd set Jake on the floor beside the phone, and stroke his back as he lay on his belly and stared at the wall. After each call, I recorded the name, phone number and conversation in a green loose-leaf notebook, dating each entry and color-coding the referrals. I spent my nights researching on the Internet and reading about all of the different treatments for children with autism -- everything from swimming with dolphins to play therapy, secretin hormone therapy, cranial sacral osteopathy, auditory integrative therapy, psychic therapy, nutrition and homeopathic therapy. Everyone had different opinions about which therapy to choose, how many hours, and how to get funding. Each one not only espoused the virtues of their own therapy but also denounced all of the others.
A Huge Commitment
Ultimately, my husband, Franklin, and I chose ABA as the foundation of Jake's therapy. Our decision was based on all of the scientific evidence coupled with conversations with parents of autistic kids who had been successfully mainstreamed as a result of intensive ABA.
"It's a huge commitment," one of the ABA therapists explained to me and Franklin. "It's not just about his therapy sessions. You'll have to adjust your entire lifestyle to accommodate your son."
And so we did. We converted the downstairs of our house into Jake's therapy room. We bought all of the supplies, toys, furniture, food and special reinforcers the therapists told us to buy. I put my management consulting business on hold. Managing my son's therapy became my full-time job.
Franklin and I thought that the hard part was deciding on which therapy to choose. We were wrong. We had no idea how difficult it would be to find qualified ABA therapists. Even after having been accepted into the Alpine Outreach Program, we still had to hire our own team of therapists. Alpine would provide the training. After calling our local county officials and parents of autistic kids for recommendations, we quickly learned that the most qualified therapists were booked. We were told that a college student or any bright energetic adult could be trained, so we posted ads at the library, YMCA, coffee shops and job placement centers at the three local colleges. Weeks went by and we were only able to find three therapists who could give us a combined total of 15 hours a week. This was nowhere close to our 40-hour goal.
We knew the importance of early intervention, remembering the crucial window that would begin to close over the next year if we did not get in all of Jake's therapy hours as soon as possible.
So Franklin and I made the decision to become Jake's therapists. We went through 10 hours of classroom training and 20 hours of experiential training to become qualified to teach our son. We sat through lectures on operant conditioning, learned to take scientific data and completed hundreds of pages of required reading.
During my therapy sessions, I was instructed to sit directly across from Jake, about arm's length distance, so that I could easily reach over to him. On the little table next to us was a plastic tackle box with his "edible reinforcers" -- M&M's, chocolate chips, pretzel pieces, raisins and treats that were used as rewards throughout the session. The box by my feet contained nonedible reinforcers -- airplanes, whistles, shakers, rattles and other stimulating toys that might provide motivation for Jake to complete a task. I placed the data sheet where I recorded the results next to the thick black program book, which gave me detailed instructions on which programs to teach in which order.
Jake needed a lot of help during therapy. He had to relearn simple things that he used to know. Like how to respond to the instruction "sit down" or "stand up," or even how to respond to his own name.
"Sit down," I'd say in my therapy session with Jake, using an even tone and looking directly at Jake the way the therapists taught me.
No response. Jake stood still, eyes gazing at the ceiling.
I recorded an "I" for incorrect on his response sheet for his first "trial."
"Sit down," I'd repeat, this time placing my hands on his shoulders to gently guide him into the chair.
Eyes still averted, he allowed me to ease him down.
"Good boy!" I'd squeeze an M&M between his pursed lips for his efforts, recording a "P" to indicate that I'd had to manually prompt him for his second trial.
"Sit down," I'd repeat 27 more times, alternating between M&M's, chocolate chips, hugs and tickles, recording each discrete trial.
Then I'd begin with 30 trials of "stand up," "turn around" and other "one-step" commands before moving on to teaching Jake to "do this" as I manually prompted him 30 times to drop a block in a bucket.
After each of the 30 trials, we'd take a structured play break. It took a total of 150 trials over three weeks to teach Jake to sit down, 180 trials over three weeks to teach Jake to stand up, and 2,100 trials over 10 weeks to teach Jake to look at us when we called his name.
I remember sitting in a meeting with a group of consultants and autism specialists shortly after Jake had been diagnosed. One of them was anti-ABA, complaining about the intensity of the ABA hours.
"It's absurd to think a 2-year-old can sit through all of these hours of therapy. Your son should be out playing!" she said, throwing her arms up in the air.
Without missing a beat, Franklin looked into the woman's eyes and replied, "You don't understand. My son doesn't know how to play."
Play breaks during therapy sessions were structured so that Jake could learn how to play. Jake also had to learn what the therapists called "gross motor imitation." They told me he would need to master this skill before he could begin to speak. Gross motor behaviors are big movements like jumping or clapping; most toddlers do them naturally. If I clapped my hands or raised my arms above my head and asked Jake to copy me, he couldn't. He'd simply stare off into space, not moving a muscle. He used to clap his hands. At 17 months, he used to imitate all kinds of things that Franklin and I did.
I spent hours clapping my hands and stomping my feet and saying "do this" the way Jake's therapists taught me. Jake stared at the space between the top of my head and the ceiling. I took his tiny hands in mine and showed him how to clap. The minute I let go, his hands fell limply in his lap. I raised my arms in the victory sign above my head and said "do this!" My son stared through me as if I was not even in the room. I would bring Jake in front of the mirror and raise his arms up high so that he could see himself. I was not sure what it was he saw.
At first, in addition to conducting my own sessions with Jake, I sat in on all of the therapist's two-hour sessions. I did this partly because I wanted to learn as much as I could about the therapy, and partly because I missed spending time with my son. Jake cried a lot then -- sometimes through the entire two-hour ABA session. I cried too, resisting the urge to interrupt his therapy just to hold him. Sometimes I entertained thoughts that perhaps the anti-ABA people were right -- this approach was too grueling for a toddler. One day a therapist suggested it would be better for both me and Jake if I didn't sit in the room during the sessions. I heeded her advice. That afternoon I found myself in the local electronics store buying cable wire and a $70 monitor to hook up to my home video camera. By the following day, I was watching Jake's therapy from the next room.
After his initial few weeks of crying, Jake actually began to look forward to the sessions. He'd smile shyly and peer out from behind my leg as the therapists walked through our front door. He'd follow them down the stairs and sit happily in his little chair when prompted.
Building a Team
Ultimately, we found three more therapists to join our ABA team. The combined total hours finally reached the magic number. With 40 hours of ABA, Franklin and I were able to transition from our roles as one-on-one therapists to generalists. This meant that we no longer worked with Jake in the intensive two-hour sessions, but were required to stay on top of his therapy so that we could generalize the skills he was learning outside of the therapy setting. For example, when Jake was being taught to wave bye-bye, we would make sure to prompt him to use this skill whenever the situation arose -- when someone was leaving the house or the park. Sometimes we would create opportunities; Franklin would walk from room to room in our house and I would hold Jake's hand, prompting him to wave bye-bye as Daddy left the living room and headed toward the kitchen. When Jake was learning to point to indicate what he wanted, we were taught to hold out on rewarding him until he actually indicated his preference with his index finger. Admittedly, there were times when either Franklin or I would look at each other and say, "Just give him the cookie," after waiting 15 minutes for him to point at it. We knew from his grunts and whining what he wanted. But we were haunted by the ABA rule about making sure we rewarded the same behavior that was being reinforced in his sessions, so our guilt usually outweighed our impatience. Even the language of ABA became part of our everyday vocabulary. You'd often hear us at the park speaking to Jake using awkward expressions like "good sliding down the slide" or "show me jumping."
I posted Jake's weekly schedule on the refrigerator so I could stay on top of the different sessions he had with which therapists on which days. Jake's typical Monday schedule read:
9:00-11:00 ABA (Laura)
11:30-12:00 Speech therapy (Jane)
12:30-2:30 ABA (Anna)
3:00-5:00 ABA (Lisa)
5:30-6:00 Occupational Therapy (Deb)
All of my friends had schedules for their toddlers that included playdates, gymboree or music class. And they all made time for naps. Before the diagnosis, Jake napped around two to three hours a day. After, we crammed in a 20-minute nap between a mid- and late-afternoon session.
With the exception of occupational therapy, Jake's full day therapy sessions were held at home. On Saturdays and Sundays we tried to conduct half-day sessions so that we'd have time to take Jake to the park and do some of the regular things families do. Whenever we went away for the weekend or vacation, we brought a therapist with us.
Months of therapy went by and even though part of me grew more optimistic as I watched Jake master simple skills, part of me was plagued by fear. I could no longer imagine my son being able to talk. Parents always assume as long as the number of fingers and toes add up, their baby will walk, talk, play and grow up to be an adult. I could not live by these assumptions. I wondered what it would be like for him if Jake grew up only being able to grunt. Because he was 2, I could nonchalantly say to the other mothers at the playground, "Oh, my son has a language delay." They'd nod knowingly, for boys often speak later than girls. But I imagined that when Jake turned 6 or 7, I would no longer be able to cover for him. As he grew, I'd no longer be able to protect him.
One night in October, three months after Jake's diagnosis, I was given the phone number of the mother of a child who shared Jake's diagnosis. She was so supportive, encouraging me to keep up the number of ABA hours and expounding upon the importance of early intervention.
"My son Mitchell was diagnosed at the same age as yours. My husband and I were diligent about making sure he got lots of one-on-one therapy a week. We were doing speech and occupational therapy, but most of it was ABA. It's true what they say about brain plasticity at that age...get 'em early and they have a chance of..."
And then I heard a little voice over the phone.
"Mommy, can I go out and play now...pleeeeze?"
"Wait a minute honey, I'm almost done."
"Who was that, your older son?" I laughed.
"No, that was Mitchell."
And she let me. She knew. She knew what it was like to be on my end of the phone. I couldn't imagine being on hers.
Over time, Jake learned how to clap, wave, sit, stand, jump and turn around. He learned how to point to objects and body parts, identify pictures of familiar people, imitate gross motor movements and play. He even began to do vocal imitation. I'd watch as he focused all of his attention on the therapists' faces, mimicking the shape of their mouths as they made a sound, then trying to reproduce the sound on his own.
On Monday, May 4, approximately nine months after Jake's first day of therapy, his therapist called me into the session. Prompting Jake, she whispered in his ear and nudged him toward me. Standing in the middle of the room, he smiled and looked back at the therapist. She nodded her head approvingly.
"Lubyoo," he said in a little voice.
Hugging him close to me, I echoed "Lubyoo too."
Jake has been through two years, 700 days, 4,160 hours and hundreds of thousands of trials of ABA therapy. Gradually, his language began to come in, as did his social and developmental skills. He potty-trained at 3. He had his first friend at 3 and a 1/2. At 4, he sang Happy Birthday to me.
We began to mainstream Jake at a "typical" preschool last year, and with the aid of shadows (trained therapists), Jake is beginning to thrive in the school setting. The shadows work closely with his teachers, who report that Jake is fitting in. To his classmates, Jake is just like them. I know that my son still needs help -- not in the same way that I knew two years ago when I found Jake lying face down in the driveway. I can see it in his eyes. He doesn't understand storytime the way the other kids do. And his language skills are still behind his peers.
Jake's circuit breakers, which gradually shut down after 17 months, have almost all clicked back on. But until all of them are on, Franklin and I are committed to continue with his therapy. We'll do it until we are sure that Jake can make it on his own. The son we thought we'd lost has come back to us. We don't want to lose him again.