Small steps: Helping autistic children

      When Michele Tombari and David Grant learned their toddler son was autistic, they vowed to do something to change it.
      "When I thought of autistic, I thought of a child 9, 10 years old, in a corner, rocking. Just totally `gone.' That's just not going to happen" with 2-year-old Alden, Tombari says emphatically.
      The traditional view is that autism is a neurological problem with no cure.
      Alden's parents hoped and believed otherwise.
      They started searching, and found like-minded parents at FEAT -- Families for Effective Autism Treatment. The local support group started in the summer of 1996 and is affiliated with FEAT in California, where the acronym stands for Families for Early Autism Treatment.
      By the time Alden was about 15 months old, Tombari and her husband had already noticed puzzling behaviors.
      "He didn't babble. At 18 months he still had no words. He wouldn't point to anything," Tombari recalls. If anyone other than Mom or Dad tried to touch him, he'd "do the limp thing to get out of their grasp." He'd ignore loud, crashing sounds nearby -- and then whine when the air conditioner quietly clicked on.
      Most frustrating, Grant says, was the empty feeling they got from Alden's inability to make eye contact, to connect emotionally. Tears slide down Tombari's cheek at the memory of the antics she used to go through -- making funny faces and sounds -- in her failed attempts to get Alden to glance at her while he was nursing: "I must have looked like an idiot."
      After repeated requests to Alden's pediatrician, the couple obtained a referral to a pediatric neurologist, who diagnosed the boy with autism.
      Today 26-month-old Alden is a different boy, though there's a lot more ground to cover. For the past six months, his parents have been experimenting on their own with various approaches -- involving both activities and diet -- that are designed to either counteract or compensate for the characteristics of autism.
      Already, Alden is making better eye contact. Occasionally he points. Sometimes he lets other relatives touch and hold him.
      Just a week ago, the couple brought in a representative from the Lovaas Institute for Early Intervention in Los Angeles to formally train themselves -- and 13 others they personally had recruited -- to do daily behavior conditioning with Alden that they hope will propel him toward normalcy.
      The institute's approach -- developed from years of research by Dr. O. Ivar Lovaas while in the psychology department at the University of California, Los Angeles -- is controversial. The institute doesn't use the word "cure," but claims that some children treated do become "indistinguishable from their peers," according to an explanatory videotape.
      "Rather than take it as a single (medical) entity, we try to break autism down into a set of behaviors" and then tackle those behaviors, says Erik Lovaas, the trainer who came to the Grant home for two days. He is the son of O. Ivar Lovaas.
      The institute's therapy tries to reduce unwanted behaviors associated with autism, and increase wanted behaviors that are missing. On the deficit side, an autistic person typically does not communicate with words, does not interact with other people, evades eye contact or looks "through" people, and does not react normally to sounds.
      On the side of behavioral excess, an autistic person is apt to be aggressive, inflict pain on him or herself, and spend hours in repetitive and seemingly meaningless acts such as spinning objects or staring at reflections.
      "Do same. No, do same," Erik Lovaas says. He is sitting at a little table with Alden. There are two toy blocks on the table, and a bucket.
      Alden's therapy is beginning.
      Lovaas is teaching Tombari, Grant and their recruits a crucial step -- how to get Alden to not only pay attention to a comment directed at him, but to react appropriately.
      Cause-effect is an automatic principle in human interaction -- Mommy tickles Baby so Baby giggles. But cause-effect, or stimulus-response, seems a mystery to the autistic child.
      "Do same." Lovaas dumps a block in the bucket, then gives verbal and gesture cues for Alden to copy, using the remaining block. When the child hesitates, Lovaas says no, then repeats his simple command.
      Eventually, plunk. Alden does the same with his block, and the room of trainees erupts in applause, smiles and compliments.
      The goal is not just for Alden to comply by doing the requested task, but for him to enjoy the "reward" of social interaction. For some autistic children, praise is not enough reward, so a bit of a favorite food is also bestowed.
      "We give a lot of reinforcement for the very minutest achievement," Lovaas tells his listeners. Hugs and kisses, or picking Alden up in his chair to "fly" are other possible rewards.
      The therapy pace is fast. After Alden successfully copies a move several times, Lovaas says, "Go play" and Alden takes a break. Quick interludes of play alternate with other programmed tasks, which are always enthusiastically presented as a game.
      Every child's therapy program includes a variety of tasks as well as repetition. For Alden, "do same" will soon be joined by "give me" and other simple activities that combine language and an action.
      To start with, every person serving as a therapist for Alden must use the precise, same wording. "Give me hug," for example, has to be the universal verbal cue. Variations like "Yo, hug me" will not do because even a family's native language is confusing, at first, to the autistic child, Lovaas explains.
      Over time, tasks become more complex. Therapists help the child generalize those skills to real-life situations away from the therapy table. Alden will begin with 20 hours of therapy per week, working his way by about age 3 up to 40 hours a week.
      Other FEAT parents estimate 40 hours of therapy per week costs them $1,000 to $1,200 a month. The initial training workshop usually costs more than $2,000. The costs are rarely covered by health insurance, they complain.
      Asked why some health professionals refuse to suggest therapy for their autistic patients, Lovaas guesses, "It's expensive. It's intense. ... A lot of professionals are afraid of setting false hopes for some families."
      According to Lovaas, the oldest individuals who have gone through his father's program are now in their 20s.
      In one Lovaas study, 19 children diagnosed as autistic -- all less than 4 years old -- received an average 40 hours of therapy per week for two or more years.
      Of the 19, 47 percent successfully passed first grade in a regular public school class and scored average, or above-average, in intelligence testing.
      Of the 19, another 42 percent passed first grade in special classes for those with learning disabilities. Their intelligence scores placed them in the category of mild mental retardation.
      Two children (11 percent) were placed in classes either for the autistic or mentally retarded. They scored in the severe mental retardation range.
      The children were reevaluated at age 13, when they had been out of treatment for more than five years. Seventeen of the children were still classified as they had been at the end of first grade.
      Dr. Donald Johns of Las Vegas, a pediatric neurologist, has diagnosed autism in some patients. Long-term studies into the value of the type of behavior conditioning popularized by Lovaas is "ongoing," he says. "There's some evidence at this point that it may be beneficial," particularly for higher-functioning autistic children who start treatment before age 4. "But, if we find out it does work, how are we going to fund it?," Johns asks. "Politically, for children there's not a strong advocacy, unlike for seniors."
      "Recovering" an autistic child is the phrasing Jan and Allen Crandy like to use. They are parents of an autistic daughter, Megan, 3, and helped found the Las Vegas chapter of FEAT.
      Since Megan began therapy designed by the Lovaas Institute seven months ago, she has gone from a functional vocabulary of only one word, "book," to a repertoire of skills that includes a vocabulary of more than 100 objects and 50 actions.
      Her tantrums, a common phenomenon among autistics, have significantly declined, which her mom links both to the therapy and to eliminating wheat from Megan's diet. According to Jan Crandy, recent reports suggest wheat allergies are common among autistic children and eating wheat products seems to worsen their symptoms.
      To hear Megan initiate a conversation by pointing to a picture and saying the two-word phrase "riding bike" is nothing short of a miracle, says Crandy.
      Doug and Jennifer Hannig, also Las Vegas members of FEAT, define their son's progress by other measures. Douglas Hannig III, now 3, is in a therapy program designed for him by the Center for Autism & Related Disorders in Encino, Calif.
      From infancy, Douglas cried frequently, resisted any physical contact, avoided eye contact. As he got older, he'd "turn in circles for hours, if you didn't stop him. ... You could scream in his ear, and he wouldn't flinch," says his mom. "Until he was 3 years old, I never saw my son's eyes. He'd look through you. We thought, `His body is here. But his soul is not here.' "
      Slowly, the Hannigs are seeing small signs of change as his therapy continues.
      Rebecca Hannig treasures a moment that occurred just a couple of months ago. She considers it the first time that Douglas ever communicated with her on his own.
      It's a moment that any parent of a nonautistic child would take for granted.
      Hannig was standing at the kitchen sink, working, when she noticed that Douglas had come up and was deliberating pushing on her leg.
      He pushed, as if to nudge her. So she took a step in the direction he was pushing. He nudged again, she stepped again. Eventually she found herself standing at the refrigerator, and concluded that he wanted a glass of milk.
      "That's a major, major step for him," she says proudly.
     
     Early diagnosis key to helping autistic children
      British researchers are promoting a test to help pediatricians identify autism, the earlier the better.
      Currently, diagnosis in the United States doesn't occur until age 3, according to Families for Early Autism Treatment.
      The British test, which was developed in 1992 and underwent large-scale testing in 1996, is called the CHAT, a Checklist for Autism in Toddlers.
      The research by Simon Baron-Cohen suggests that children who failed three particular items on the test at their 18-month checkup were at "high risk of being autistic," according to a report published last year in Autism Research Review International.
      Those three items are:
      - Protodeclarative pointing -- This is a child's pointing at an object to direct another person's attention to it -- not to obtain that object but to share interest in it. "Protodeclarative" refers to the child's ability to, in effect, make a statement via gesture before he or she has the verbal ability to do so.
      - Gaze monitoring -- This involves a child looking in the same direction as an adult is already looking.
      - Pretend play -- A physician might ask the parent if the child ever pretends to pour liquid out of an empty bottle, drink from an empty cup, or put a doll or stuffed animal to bed.
      The checklist requires the doctor to ask a parent questions and directly observe the child's behavior.
      The CHAT also asks parents:
      Does your child enjoy being swung or bounced on your knee? Does your child take an interest in other children? Does your child enjoy peek-a-boo and hide-and-seek? Does your child ever use the index finger to ask for something? Can your child play properly with small toys -- cars or blocks, for example -- without just mouthing, fiddling or dropping them?
      A yes answer to these questions is considered normal.
      According to Baron-Cohen, pediatricians should use CHAT results not to diagnose autism, but to refer patients to an autism expert.