Explaining a Diagnosis

Several years ago I remember reading The Trumpet of the Swan, by E.B. White (1970), which follows the life of the fictional swan Louis. Most of the swans view Louis as “defective” because of his lack of a voice. What good is a trumpeter swan that can’t trumpet? How will Louis woo a female if he can’t croon to her? However, with the help of his friend Sam (a young boy who loves animals), Louis believes in himself and works hard to learn to read and write and to play a real trumpet. Along the way, he secures several interesting jobs to earn money to pay for the trumpet, and eventually wins his true love, the beautiful swan Serena. What a beautiful reminder that different does not equal bad, and that hard work and the help of friends can lead to success and the ability to overcome one’s difficulties.

Although the story describes the life of only one voiceless swan, there were surely other swans that couldn’t trumpet, even if the swans in Louis’ pond had never met one. There is a name (or “diagnosis”) to describe someone who cannot talk—we say that he is “mute”. Louis’ mother had been the first to notice that he was different from the other swans. After she told her husband that she suspected Louis was unable to talk, his father “tested” him, trying unsuccessfully to get him to talk. The other swans were not always kind to Louis, not because he was bad, but because he was different from them. Even after he learned to read and write (an exceptional accomplishment for a bird!) they did not accept him because they could not read what he had written! But Louis had incredible experiences both because of and in spite of his differences, and his life turned out well as he ignored the occasional taunting and ridicule, and instead learned to work hard, to rely on the help of friends, and to celebrate his differences.

Many of you live or work with children or adults with “differences,” or perhaps you have some “special needs” of your own. Some differences are very special; perhaps a person is always smiling, can navigate around town very proficiently, and has an incredible memory. Other differences may cause concern or difficulties. A person may be unable to kick, throw, or catch a ball. He or she might have difficulty looking at people’s eyes, reading social cues, and have unusual and intense interests, fears, preferences, and dislikes. Sometimes testing reveals that these particular differences have a name—Autism, or Asperger’s Syndrome. This diagnosis is not like cancer or chicken pox. It will not make a person sick, nor is it contagious. Instead, it describes some of the unique differences and abilities common to people with these diagnoses. There are different terms that may be used, including autism, high-functioning autism, PDD (pervasive developmental disorder), and Asperger’s.

Asperger’s or autism might not always feel like a good thing to people with the diagnosis (or to those who live and work with them), but it is to be celebrated because it is an integral part of each individual! For many people, the diagnosis also brings about unanticipated (but positive) friendships, lifestyle changes, and memories.

Together, we hope to spread this message to the world; that we may all come to accept and appreciate the uniqueness of each individual, with or without a diagnosis!