Читать книгу A Thin Place - Jack Peterson - Страница 32

August 21, 1992

San Diego, California

Thirty minutes later. Celia was at a loss how to respond. Her worst fears had just been confirmed.

Dr. James Lymburner was quick to recognize her hesitation. “Let me see if I can simplify this a bit,” he offered.

Celia took a deep breath and nodded. She listened patiently to what she was certain was the same explanation he had delivered to other parents many times before, but that didn’t ease her anxieties. The only positive was that his voice and presentation projected a confidence level she wished she could teach to her sales representatives in the field.

“Don’t be alarmed,” Lymburner encouraged. “I don’t see many parents that initially understand the diagnosis, and certainly not all the variables we find with autism.”

There was that word again. “I am completely baffled by it,” Celia offered meekly, “Are you sure Jonna has autism?”

“Not one hundred percent, but I believe she could have a milder form of autism. Autism has a broad spectrum. Just saying the word autism is too vague. Oh, you’ll eventually hear some other, older, terms for autism like primary autism, atypical autistic disorder, childhood schizophrenia, autistic-like disorder and many more. There are many labels because autism has not been studied long enough to form any kind of real consensus. Prior to 1945, it had never been seen before. We’re discovering new things about it every day.”

Though Jonna’s diagnosis wasn’t unexpected, Celia still couldn’t control her shock. She had no doubt the diagnosis was accurate. She had done her homework. Lymburner’s degree in experimental psychology from the University of California in Los Angeles was buoyed by a long list of other accreditations, but his credentials were not the reason she was there. It was his clinic. It was at the forefront of autistic studies in the United States. Jonna’s gradual change from a perfectly normal and loving child to one of complete unpredictability had become nearly unbearable. Four weeks earlier, she decided both she and Jonna needed outside help and direction.

“I guess I’m still a bit overwhelmed,” Celia responded, her voice barely audible.

Lymburner nodded, offered an understanding smile, and moved on. “I can sympathize. Autism is totally unpredictable. If a child has autistic tendencies, depending on the severity, we begin seeing telltale signs of it anywhere from a few months old on up to three or four years of age. While most autistics have familiar traits, their learning curves differ dramatically. That is where we come in.”

Celia timidly nodded, trying to force a smile, but another question got in the way. “I am going to need a reference book! You said that autism was relatively new. What do you mean by that?”

“I’m afraid autism doesn’t share the benefits of typical medicine. Psychology has been around for hundreds of years, and medicine has been practiced in some form since the stone ages. As a result, we have historical databases. In medicine, we draw on past mistakes and successes to help us learn how to treat disease and physical abnormalities. In medical terms, autism is relatively new. Because of that, we have nowhere near the database to help us treat it as we have with other afflictions.”

Always attentive, Celia rarely allowed herself not to clarify something she did not understand. This was no different. She wanted more. “What do you mean by new?”

Lymburner sat back in his chair. “That’s a relative term. It was back in the early forties when a psychiatrist named Hans Kanner studied a group of young children that had been labeled as mentally retarded. The children had pretty much been discarded, institutionalized. Mental retardation was a virtual death sentence back then. Like Jonna, some of the children Kanner studied had a similar trait in that they showed normal areas of intellectual development during their first year or two of life but eventually developed patterns of behavior that resembled mental retardation. The children failed to develop in many areas but, the most obvious, was that they rarely related in any way to any other human. They failed miserably to show any kind of emotion. More often than not, they even failed to recognize their own parents. Kanner took the Latin word auto meaning self to describe the self-centered behavior of these children and coined the word autistic. Eventually the word became autism. He had found a new phenomenon, a group of children with very unusual behavior characteristics that were anything but normal.”

Trying to digest the little history lesson, Celia looked away a moment before turning back, “You are sure of your diagnosis?” she asked.

Lymburner raised his hands in a halting gesture. “As I said, ours is not an exact science. It would be great if it was as simple as a blood test but it is not. For children under three years old, the diagnosis is never certain until we see them through all the critical milestones through three years. Some children just develop slowly, but Jonna has missed some of the benchmarks for her age so a preliminary diagnosis has to include the possibility of autism. No matter what is causing the delays, any child struggling with behavioral problems should get help as early as possible. There are no downsides to early intervention, but there are downsides to waiting. We can prescribe a program to help them get better. We’ll know more after we’ve seen Jonna for a few months.”

Overwhelmed, Celia stared over Lymburner’s shoulder but her obvious sense of confusion did not deter Lymburner’s enthusiasm. His eyes grew even wider, his voice louder. “The good news is that the majority of autistic children, over time, get better. There are delays and plateaus in their learning curve, and they are not as predictable as a normal child’s. History tells us that their learning curve eventually goes the distance. Autistic children just tend to start and stop a lot. They have just as many brain cells as the normal child but, if I may use an analogy, they are wired differently. Their learning curve can be compared to taking a cross-country trip. Normal children have a road map, autistic children are flying solo, with no map. Oh, the autistic group will eventually get there, accomplish the same goal, but they will have a few more wrong turns and roadblocks along the way. It is just a slower process. These children are not mentally retarded. They have developmental challenges that can be partially defeated. I warn you, there are many challenges ahead, but there is no reason not to have a positive attitude. There are too many success stories. We rarely see a child regress with age.”

A hush fell across the office as Celia reflected on Lymburner’s explanations. Retarded was a jarring word, but Celia was relieved that Lymburner’s explanations were not the textbook variety she expected. A feeling she thought nearly impossible only a few minutes ago began to overcome her senses. She was cautiously optimistic.

When evening came and Jonna already in bed, Celia finally found some quiet time. She sat at the dining room table and opened the clinic’s enrollment packet. The clinic was partially subsidized through donations and grants with one substantial annual contribution from a large unnamed corporation. While the grants would not subsidize all of Jonna’s treatments, Lymburner had been optimistic that most would be covered. Celia sat back and smiled. Lymburner had bridged a very delicate subject for her. She set the enrollment packet aside and paused a moment to reflect on her relationship with Jonna’s father. If there were a word that could accurately describe how she felt toward Emil and his wife Elizabeth, she did not know what it was. They both exuded a comfort and support level she never expected. Jonna truly had three parents. Now, Jonna would surely need them all.

It was near midnight when Celia turned to the final page of the application. It was a brief questionnaire about Jonna’s habits, the last being about her favorite activities. Celia knew there could be only one answer. She wrote Jonna enjoys drawing on the appropriate line. Her answer only seemed simple.