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Children with Down syndrome often have a reputation for being friendly, social and enjoyable. Often this reputation is accurate, especially in the early years. However, I have followed up several children over a ten-year period and have made a very bothersome discovery. Many children with Down syndrome who were highly communicative as young children are now often withdrawn, socially isolated and showing several autistic features such as isolating themselves, doing or saying the same things over and over, talking to themselves, and overreacting to stimulation.
Kenny, at age 6, was very passive with people, responding in only single words and seldom initiating contacts with people. This was an added concern because at ages 3 and 4, he was much more social and communicative. After observing him in his classroom and with his family, we saw him as a very obedient, compliant child who responded to questions and commands but rarely played with others or engaged in conversations even though he knew the words. After a few months helping his parents and teachers reduce their questions and increasing their joint activity playtimes as they matched his actions with appropriate words, we saw Kenny become conversational and regain his enthusiastic interest in communicating the great deal of knowledge he had. What appears to have happened was that Kenny’s family and school had been focusing on teaching school-related language rather than language appropriate for friendships and conversation. Here is another example of focusing on language as knowledge to be stored and performed rather than as a tool for relationships.
Matthew’s mother, Becky, called me when he was eight concerned that he was isolating himself and in the habit of talking about irrelevant or bizarre things as well as doing old motions in apparently useless repetitive ways. Matthew had been a relatively passive child but at age five was beginning to talk more in conversations. This regression into autistic-like habits was a real concern. As I worked with Matthew and Becky, I saw that their relationship had become much more a teaching rather than a playful one. Then, as Becky returned to frequent playtimes with Matthew, he reduced his isolated ways. Becky also learned to ignore Matthew’s inappropriate and bizarre language; her corrections and explanations seemed to be reinforcing just the strange behavior she feared. Becky also learned to show the boy how to talk about their immediate actions and to keep him talking about a topic a little longer. In earlier years, Becky had followed the book, Becoming Partners with Children, with success. Once Matthew began to talk, she forgot many of the matching and turntaking habits that helped Matthew at first. Becky used the material in the book as a practical guide to help Matthew have genuine conversations rather than talking alone in his own world.