Frankie’s Journey Toward Manhood
The normal rules of child development have not always applied to my son, Frankie, who was diagnosed with autism almost 10 years ago.
Although he will not turn 12 until next spring, his fast-growing body is already showing signs of puberty. And although he sometimes still acts like a sweet little boy, at other times he displays an independent streak that borders on defiance -- like many youngsters his age.
Frankie is a bright boy. He is also extremely verbal, a fact that sets him apart from the autistic children who cannot speak as a result of the mysterious disorder that interferes with their brains’ normal development, impairing the ability to communicate and interact socially.
When Frankie was first diagnosed, it was estimated that one in 2,500 children suffered from autism. The number is now closer to one in 250, and the reasons for it are passionately debated by parents and public health specialists.
Are we simply better at diagnosing autism now? Or are environmental factors -- something in our food or perhaps in childhood vaccines -- triggering the disease more frequently?
Whatever the cause, California is in the forefront of states trying to cope with the effects of the apparent epidemic. A well-documented surge in the number of children diagnosed with autism clearly put an unexpected dent in the state Department of Health and Human Services, which provides services to families under California’s groundbreaking Lanterman Act of 1969.
It was a caseworker at the Lanterman Regional Center in Los Angeles who, in 1995, first helped my wife, Magdalena, and me understand how much we could do for Frankie if we were willing to fight for his rights -- for educational programs that meet his special needs, for instance -- under the Lanterman Act and related federal laws. Those rights and our advocacy skills proved extremely useful over the ensuing years as we identified innovative therapies that might help Frankie.
We were also fortunate to have the resources to pay for those therapies when our school district or insurers would not. Most did benefit Frankie, from the applied behavior analysis first developed by researchers at UCLA to the Tomatis hearing treatment to the Greenspan floor-play method to the Lindamood-Bell reading program. But I can only wonder what it must be like for parents who are just setting out to help a newly diagnosed child. If we are indeed experiencing an autism epidemic, then the financial challenge of helping these children lead normal lives will only grow.
I will always be glad we were able to meet Frankie’s needs early on, when his young brain could still be retrained. But I am coming to realize that his progress was a mixed blessing. Even as these therapies have helped Frankie come closer to being like a normally developing child, he is becoming ever more conscious of the fact that he is different.
Like other children with high-functioning autism, a sudden change in routine can throw Frankie completely off kilter. Take school, for instance. This was Frankie’s second year back in a classroom setting after two years of home schooling. It has not always been a smooth transition.
He attends Village Glen, a private school in Sherman Oaks affiliated with the HELP Group, a nonprofit agency that serves children with special needs. His teacher, Stacey Lauderdale, is very smart and patient. But Frankie’s anxieties about loud or sudden noises (like the alarm bells that signal school fire drills) can provoke him to angry outbursts that disrupt the class.
Sometimes unexpected noises even make him angry with his Labrador retriever, Chocolate. Normally he’s very affectionate with our big, friendly dog. But when Chocolate suddenly bounds into the backyard, loudly chasing a cat or squirrel, Frankie will shout at the top of his lungs, “Make him stop barking!” Somehow, Frankie is going to have to learn that the world won’t stop for him.
Pondering the changes Frankie is undergoing, I recalled conversations I had with some of the autism specialists who treated Frankie. As they helped him learn to speak again or to make eye contact with other people, I would celebrate his progress. But they would wisely try to temper my expectations, warning me to be prepared for a difficult adolescence; that the confusion and angst even normal youngsters face at that awkward age would be compounded by Frankie’s awareness of his disability.
I have dreaded Frankie’s adolescence. But there is no postponing it. My little boy is becoming a young man. He’s going to need more of my time, which is one reason I will write less frequently for this page. He’s also going to need more privacy than I have allowed him. He’ll need it to decide how he prefers to cope with autism.
So the two great gifts I can give Frankie this Christmas, and in years to come, are my presence and his privacy. And he shall have them both.
Frank del Olmo is associate editor of The Times.
