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1. Introduction

 A real story

Six years ago, after several months of visiting several medical specialists and undergoing blood tests, CTs, EEGs, and audiograms, a neurologist finally diagnosed his only son, A., with autism.

At first he didn’t believe the doctor who made the diagnosis. Clearly, he thought, this doctor was incompetent.

A more skillful doctor could find an easy answer to his son’s disturbing symptoms. He looked for that enlightened doctor for several more months. Many doctors examined him. However, the diagnosis remained the same: autism.

He is a physician; his wife is a nurse. They have two other “typical” children- daughters, who are bright and vivacious.

They noticed that although their  son achieved most of his developmental milestones, he was unlike his sisters.

He didn’t speak much, didn’t make eye contact with them, and didn’t like to be held or cuddled. Autism was the diagnosis they feared; the one that his wife and  him would not speak aloud, even to each other. However, the diagnosis was confirmed. His wife and him  both work in a large university hospital.

They thought they knew, at least in general terms, what autism was and they were devastated. He  thought of children he would seen during his  medical training. They lived in institutions; they rocked back and forth, flapped their hands continually and muttered incomprehensible words, screeched when touched them, or were just silent. In some ways, he felt as if the neurologist had told them that they son was dead.

Though his son was only three when he was diagnosed, he already had great plans for him. He was a beautiful boy, strong and healthy. His college fund was started and he knew he was bound for the Sport League. He would play sports; do well in school. He’d become the president of his class. He would have all the advantages he never had. He would be successful and he would make the father proud. Now he was told that none of that would ever happen. His dreams, at least, were dead.

For weeks, his wife and him were in shock. They didn’t discuss the diagnosis with their families or friends. They stopped socializing and spent more time at home staring at they son and wondering what the future held for him and them.

At the prompting of the pediatric neurologist, they sought out an early intervention program offered by the local school district. Though he was only three,A. attended a full day of school. There he received speech, occupational, and physical therapy.

At first, the progress was slow, and A. fought them every day. Getting him fed, dressed, and onto the bus in the morning was an Olympian struggle. His tantrums increased as did they stress level.

His wife and him learned a lot about autism. They read books  and articles.They attended lectures and sought counseling. Importantly, they met other families with autistic children.They found that they were not alone in their  fears and ignorance. They  meeting others with autistic children was both a great source of comfort and practical information.

They learned how to create structure at home that would calm their son’s anxiety. They learned the basics of behavior modification and how to communicate with and motivate their son. It was challenging.

But slowly, A. behavior improved. He began to speak a few words rather than pulling them  or pointing; then he used short sentences. In those first few months after his diagnosis, he was convinced that he would never speak. This improvement was thrilling.

Everyday tasks such as bathing, brushing his teeth, and getting dressed were taught. Each task was broken down into its component parts. Each part was taught slowly, sequentially, and repeated often- but he learned them. He now completes them independently and without prompting.

The whole family takes pride in these triumphs.

A. can still be a challenge at times. Autism makes him rigid in his scheduling and finicky in his choice of foods and clothing, but he continues to make progress. He enjoys playing with his trains and drawing pictures of dinosaurs. He laughs at the cartoons on TV and dances with his sisters. He’s different, but loveable and loving.

His  wife and him have come to realize that they  grief about his diagnosis was the feeling of loss about their plans and their ambitions for him. They now have new plans and new ambitions for him.

They have hope.

AUTISM IS NOT A DEATH SENTENCE

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