Did you know that Down syndrome is named after a British doctor named Dr. Down? Or that the earliest known case of Down syndrome traces back to the year 500? Or that today is the absolute best time to have a child with Down syndrome? Keep reading to learn a comprehensive account of the history of Down syndrome -- from the year 500 to the present day.
1600
A famous artist painted "The Adoration of the Christ Child," in which one of the angels has Down syndrome. Also in this time period, a variety of historical pieces of art are believed to portray people with Down syndrome.
1866
British doctor John Down first discovered and publicly highlighted what is now known as Down syndrome. He identified a group of people whose characteristics were similar, all sharing upward-slanting eyes, flattening of the back of the head and more distinct features. At the time, he named this condition "mongolism," after the "mongoloid" shape to the eyes. (This term eventually fell out of favor in the 1970s due to its inaccuracy and the fact that it was considered pejorative.)
In 1866, Dr. Down wrote the following about people with Down syndrome:
"The face is flat and broad and destitute of prominence. The cheeks are roundish and extended laterally. The eyes are obliquely placed. The nose is small. The coordination is poor, the circulation is feeble and there is a tendency to delay development during the winter. This group of patients respond very well to training, doing better than would be expected."
1876
Dr. Down identified the fold of skin at the inner corner of the eyes, which he described as "epicanthic folds." He also noted that the ears were placed further back in relation to the head and face.
1900
Babies born with Down syndrome began to be institutionalized at birth. One of these institutions was Willowbrook Institution in Staten Island, New York. It opened in 1947. The conditions were deplorable. No potential medical problems were treated, thus leaving most of these children with Down syndrome to die early deaths.
1910
The life expectancy for a person with Down syndrome was nine years old. Then, with the discovery of antibiotics, that increased to age 20.
1959
Scientists discovered that Down syndrome was actually a genetic condition that occurs as a result of an extra 21st chromosome. This is when Down syndrome began to be called "trisomy 21."
1960
Studies began in order to determine the "cause" of Down syndrome. Scientists were stumped because the condition occurs in all races, ages and socioeconomic classes and very rarely happened twice to the same mother or father. At this time, it was believed that Down syndrome was caused by inheritable factors that were not previously identified and/or injuries sustained during birth.
(Note: Even now, in 2020, there is no known cause. Down syndrome appears to occur randomly.)
1965
The term "Down syndrome" came to be. "Down syndrome" is named after Dr. John Down, who first discovered the condition back in 1866.
1975
Bills began to be passed to protect people with Down syndrome. The Protection and Advocacy System (as outlined in the Developmental Disabilities Assistance and Bill of Rights Act of 1975), the Education for All Handicapped Children Act of 1975 and the Civil Rights of Institutionalized Persons Act of 1980 together helped create the foundation for additional federal legislation that eventually led to the Americans with Disabilities Act in 1990.
1980
People with Down syndrome were no longer institutionalized and stopped being treated as if they were less than human. Agencies, services and governments began to learn how to properly care for people with Down syndrome. Special education classes began in order to accommodate people with Down syndrome and other special needs.
1989
Archaeologists in France discovered the skeleton of a child with Down syndrome that dated back to around the year 500. The archaeologists studied the dimensions and structure of the child's skull and then compared it with the skulls of 78 other children of similar ages. Their analysis showed that the French child had numerous features indicative of Down syndrome, which the other skulls lacked. For example, the skull was short, broad and flattened at the base. This is the earliest known case of Down syndrome.
2018
Alice was born!
2020
Although institutionalizing people with Down syndrome is a thing of the past, there's another crime sweeping the world for people with Down syndrome. Due to a quick and easy blood test to detect Down syndrome very early in pregnancy, most pregnancies that test positive for Down syndrome are terminated. In Europe as a whole, the termination rate is 92%. In Iceland, it's 100%. And here in the United States, the termination rate for Down syndrome is 75%.
These statistics are incredibly sad for many reasons... one of them being that there is so much more knowledge about the many capabilities of people with Down syndrome. Today, people with Down syndrome are becoming increasingly integrated into society and community organizations such as schools, healthcare systems, work forces and social/recreational activities. In addition, people with Down syndrome are living longer than ever before. Today, 80% percent of adults with Down syndrome reach age 60, with many living into their 70s or 80s.
With all of the knowledge about Down syndrome and opportunities for people with Down syndrome today, Alice couldn't have been born at a better time. She's going to do big things in this world, and I'm so glad to have a front row seat to the show.
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