In 1984, President Ronald Reagan signed a resolution declaring October 1984 as “National Down Syndrome Month.” The goal, according to President Reagan’s original resolution, was to raise “public awareness and acceptance of the capabilities of children with Down syndrome” in the hopes that it would “greatly facilitate their being mainstreamed in society.”
Since 1984, regional, national, and international organizations have continued to observe this tradition every October. Here are just a few basic facts about Down syndrome and its history. Click on the hyperlinks for more information and resources.
What is Down syndrome?
Down syndrome is a lifelong condition in which a baby is born with an extra copy of chromosome 21, which affects the development of a baby’s body and brain, causing mild to moderate mental and physical differences.
Causes
Little is known about why a baby is born with Down syndrome. One factor that does seem to be significant is the mother’s age. Women who are 35 or older when they become pregnant are more likely to have a baby with Down syndrome. However, 80% of children born with Down syndrome are born to women who are under 35. This is because most pregnancies occur among women who are 35 or younger.
How common is Down syndrome?
According to the CDC, Down syndrome is one of the most common chromosomal conditions diagnosed in the U.S. Roughly 1 in 700 babies born in the United States has Down syndrome.
John Langdon Down
Down syndrome is named for John Langdon Down, a British doctor who first described the condition in 1866. In his original description, Down referred to this condition at “Mongolism,” a term that was accepted until the mid-20th century. However, in the early 1960s, researchers petitioned a medical journal requesting that the name be changed. One of the petition’s signatories recommended naming the condition after John Langdon Down, who not only characterized the condition first but who also fought to change the poor living conditions of people with disabilities at the time. In 1965, this name was adopted by the World Health Organization.
John Langdon Down characterized the condition, but he did not have it. Therefore, “Down syndrome” is correct, as opposed to “Down’s syndrome.”
Down syndrome in the U.S.
In the early 20th century, physicians typically advised parents to place newborns with Down syndrome in institutions. Parents who refused this advice often had no supports or services. In the 1960s, parents worked together to start independent support organizations, working out of church basements and other community buildings.
In the second half of the century, government initiatives resulted in the gradual deinstitutionalization of individuals with developmental disabilities, including Down syndrome.
Today, people with Down syndrome live in a range of settings and many are successfully employed, encouraged by their family, friends, and organizations like the Agency for Persons with Disabilities.