A Child Untickled by the New Elmo

My wife, Magdalena, may be the only Christmas shopper who is not sorry she didn’t buy a Tickle Me Elmo when she had the chance. It was weeks ago, before the $25 talking doll based on a Sesame Street character became this year’s hot toy, selling (in a few reported instances) for hundreds of dollars.

She was in a toy store with our 4-year-old son, Frankie, when she noticed the doll. Frankie likes Elmo, so she asked if he wanted one.

“No,” he replied quietly. “No Elmo.”

For Magdalena and me, that brief conversation had all the profundity of a prayer. For, as readers of this column may remember, Frankie has autism. A year ago, we didn’t know if a simple exchange of words with our son would ever be possible.

I first wrote about Frankie’s autism last Christmas, in an admittedly downbeat column. So I feel obligated--but also very happy--to report that Frankie made great progress in 1996. He is much further along the road to recovery than I had dared hope a year ago, even if many challenges still remain.

Autism is a neurological disorder, the third most common developmental disability among children. In layman’s terms, the brains of people with autism are wired differently than those of the rest of us. Sensory stimuli we take for granted--light, sound, touch and the like--affect individuals with autism differently, to a degree that they interfere with learning or even with the ability to function normally in society.

Beyond that dry summary, autism is very hard to define, much less treat, because its symptoms cover a wide spectrum. Some persons with autism must be in mental institutions all their lives. On the other extreme, researchers theorize that many children with common learning disabilities (like attention deficit disorder) may have mild forms of autism.

Frankie’s autism falls somewhere toward the mild end of that spectrum. He is among the 45% of autistic children who may recover and lead fairly independent lives. But to prepare him for “normal” life, especially the start of his formal education in a classroom setting, he needs intensive therapy during the preschool years while his young brain is going through a period of rapid, critical development.

The challenge that Magdalena and I faced this year was identifying the most effective therapies for him, and paying for them once we did. As the family of any autistic child will attest, that’s a lot tougher than it sounds.

Once Frankie is in a therapy program, specialists deal with him on a one-to-one basis, often for hours at a time. The cost can be prohibitive, even for a well-to-do family. Many health insurers refuse to pay for such therapies, putting an extra burden on stressed-out families, or forcing overburdened school districts and public health departments to foot the bill. My wife and I had to retain an attorney this year to help Frankie get some of the therapies he is legally entitled to.

But it’s been worth all the expense and trouble, for we have regained the little boy we had lost.

As recounted last year, we became aware of Frankie’s autism at the age of 2, when he stopped speaking and began to ignore toys and playmates. He would pace constantly, rubbing his hands together and humming to himself--symptoms of sensory overload.

Today he rarely lapses into such behavior, unless he is tired or feeling sick. The rest of the time he seems more like any other preschooler, albeit one about 3 years old instead of 4. Dr. Ivar Lovaas, the noted UCLA autism researcher who is overseeing Frankie’s treatment, tells us this “developmental delay” is typical of recovery from autism.

“I no longer consider autism a disease or a disability, but a delay,” said Lovaas, a psychologist who is somewhat controversial for having challenged the scientific paradigm that defined autism as a mental illness. He and his students treat autism with behavior intervention therapy, one-to-one tutoring that uses rewards (like small treats or effusive praise) to teach autistic children everything from colors to toilet use to social skills.

“We’re not trying to cure a disease called autism,” Lovaas emphasized. “We’re finding ways to teach a different kind of nervous system.”

The aim is to have Frankie prepared to enter a mainstream classroom when he starts kindergarten or first grade instead of segregating him in a special-education class.

Frankie was first exposed to behavior intervention therapy at the Center for Autism and Related Disorders, a private agency run by former students of Lovaas. He made such dramatic progress with just a few hours of therapy that we decided to enroll him in the institute run by Lovaas himself.

But while more intensive, the Lovaas program is far more expensive. It costs $60,000 per year to provide the 40 hours per week of therapy Lovaas recommends. But he insists it is cost-effective, saving society from having to support autistic adults on welfare or in mental institutions.

I’ll leave the public-policy ramifications of autism for future columns. For now, it’s wonderful to be able to talk with Frankie again. Or to watch him play make-believe games with his favorite toys--pretending is one more thing that many children with severe autism cannot do.

One of Frankie’s favorite toys is a stuffed Elmo doll his cousin Raquel gave him. This Elmo is worn and faded from many washings and doesn’t talk. But Frankie always keeps it close by. Frankie wades in his pool with Elmo, gives Elmo rides in a wagon and often insists that Elmo be buckled into his own car seat in our family van.

Frankie wasn’t interested in Tickle Me Elmo, his mother found, because he already had “my Elmo.” That’s fine with us.

More important, it’s fine with Frankie. We know because, thank God, he told us.