Ben was just over two when his mother brought him to my office for a speech and language evaluation. She was a speech pathologist herself and knew he was late to start talking. She had seen another speech language professional before me but wanted a second opinion; that professional had told her she thought Ben might be developmentally delayed.
Both mom and I sat on the floor with a few toys, a car and a truck, trying to entice Ben to play with us. Ben ran around the room, very anxious, probably because of the unfamiliar environment and a new stranger, me, to contend with. He threw the car against the wall and began to cry uncontrollably. I suggested that I leave the room for a few minutes to let Ben settle down and acclimate to the surroundings with his mother. Waiting outside I could hear her attempts to calm him down being frustrated by Ben's increasing agitation.
Finally I reentered the room and mom told me sometimes Ben would settle down in new places if he could have some place to hide for awhile. I opened the door to my materials closet and in he ran, slamming the door behind him. While Ben was "hiding" I asked mom to recount his history. I had heard very similar stories many times before. Ben was a first child, a beautiful responsive baby. He began smiling when a few weeks old and sat and crawled by six months. But sometime around his first birthday he began to change. He resisted being held, threw frequent temper tantrums, and his early first words disappeared. He had several ear infections so mom and his pediatrician thought these might account for his delayed speech so he had an operation at 20 months to place tubes in his ears to reduce the fluid in his middle ear. But when he still wasn't talking by his second birthday mom began to worry. She also noticed he had started rocking and biting his right hand when he became frustrated and screamed if she tried to take him shopping with her.
He loved riding in the car in his car seat but the second she unstrapped him and he recognized and unfamiliar locale, his back arched and he would thrash and yell. One day, she recounted, a woman who had apparently overseen such a display in the store parking lot, came over to her and told her she needed some parenting lessons. Devastated, Ben's mom said she called her pediatrician who recommended a local social worker who specialized in helping parents deal with problem toddlers. It was the social worker who recommended mom bring Ben to me.
Ben eventually emerged from hiding after I enticed him with his favorite toy from home, Thomas the Tank Engine. He sat in the floor staring at the toy train car and quietly spun the wheels for several minutes. Mom and I sat silently because if either of us spoke Ben would cover his ears and start rocking.
I enrolled Ben in speech therapy sessions three times a week and recommended that he also receive Occupational Therapy to provide sensory integration therapy to help Ben learn ways to calm himself. After about six months of therapy Ben was talking some but most of his speech was repetitive. "Teeze an kako" was one of his favorite repeated phrases as a request for cheese and crackers that we used in therapy to reinforce his good behavior. Mom said she had stopped trying to take Ben out to dinner or to the store because everyone stared at him, and she felt, blamed her as a bad mother when he yelled or threw things.
By three and one -half Ben was very hyperactive, not yet potty trained, and walked on his toes with his hands flapping in the air. He was speaking in short sentences but his speech was still repetitive and sing-song like. A typical phrase was, "You Ben friend? You Ben Friend?" and, "Ben want Tom Tom! Ben want Tom Tom!" At this time Ben was diagnosed with autism by a well regarded psychologist in the area.
For many years mom rejected the autism diagnosis. She and her physician husband felt Ben was very bright and that his behaviors and speech problems masked his other strengths. For example, by four years of age Ben had memorized many nursery songs, word for word. By five Ben could name all the major dinosaurs and tell you the era in which they lived and whether they were plant or animal eaters. But Ben's parents were crushed when the expensive private school they enrolled him in for kindergarten rejected him for first grade.
By the time Ben was seven his parents had invested thousands of dollars in private therapies, private schools, parent counseling, and ABA (applied behavioral analysis) interventions. Ben's mother had hired several different daytime babysitters to help her when a new baby girl arrived, but all would quit after a few months because Ben was so difficult to manage. They had tried ADHD medications which helped calm Ben down during the day but then he could not sleep at night, so either mom or dad ended up, night after sleepless night, trying to supervise Ben as he ran around the house at two a.m.
I have worked with many children like Ben and their parents. These children are dear and very smart in many ways. Yet these children are often locked in a mental prison that keeps them in a perpetual internal turmoil when they are young. As they age and receive therapy they usually emerge, finding solace and relief in their passionate interests. But their unique interests and strengths are rarely as comforting for the parents who see their child stop being invited to birthday parties and play-dates. Parents watch with constant anguish as other adults stare as their child rocks, spins, or obsessively recites favorite poems or perhaps counts windows or red shirts, on planes, in restaurants, at the park. As Ben's mother explained, "If Ben had a visual sign of impairment others would show compassion, I'm sure. But he looks normal, just acts oddly, so I know people think I did something wrong as a mother."
As we learn more about Autism Spectrum Disorders, we are able to identify signs earlier, and our therapy can begin sooner and have more profound effects. Ben (which is not his real name), I am happy to say, was one of an early group of children to go through an experimental computerized language program out of Rutgers University in 1996, shortly after his seventh birthday which is now available to parents as part of Fast ForWord Home from Scientific Learning. The first change Ben’s mother and I noticed after he completed six weeks of the program was that Ben began speaking in full sentences and started to initiate conversations. One day shortly after the program ended, he told me that his sister had “opened his lose tooth,” meaning that she had knocked out a wobbly baby tooth. His intonational contour also changed dramatically, from being rather stereotyped to emotional and natural. Within a month or so he began relaying other stories about home and for the first time started enjoying games that involved pretending. On a standardized language test administered before and after the program, he had gained almost two years growth in receptive language skills. Some of the growth on the test appeared to be attributable as much to his ability to pay attention to test questions as well as new language skills he had acquired from the language tasks within the program.
A few years ago Ben’s mother informed me that he attended a junior college program in computer technology and, as of my last communication with her, was working as a computer technician for a local computer retail outlet. He lived at home then but had friends at work and a hobby, not surprisingly, of building dinosaur models. Mom said, Ben “seems happy now" and his parents did as well. They were encouraged by his job, circle of friends, and hobby. With the years of anguish they were trying to help other parents cope with the fears and pain that surround an autism diagnosis in the early years, but inform on the hope emanating from new research on early identification and new technological intensive interventions that can supplement therapies.