Tuesday, October 11, 2011

A Brief History of Down Syndrome, Part 1: How Down syndrome Got its Name

John Langdon Down was a physician in 1858 who was appointed Medical Superintendent at the "Earlswood Asylum for Idiots" in Surrey, England.  The asylum had been founded a decade before and was maintained as a charity for the learning disabled.  According to Wikipedia:
"People were astonished that he should wish to pursue a career working in the neglected and despised field of idiocy. He had been one of the outstanding students of his time with every prospect of election to the staff of the London Hospital. He was concerned that all children who were afflicted by mental alienation or incapacity of any kind were placed in the category of idiots and regarded as beyond help. He had been enthusiastic about hearing of an experimental school in Switzerland but on visiting it found the inmates neglected and the Patron of the school living it up in the West End of London."
He also denounced the current idea that higher educated women produced 'feeble-minded' children and felt that racial differences were of little consequence (which was very forward thinking of a Victorian gentleman) although he did go about it completely backwards. He published Observations on the Ethnic Classification of Idiots in 1866 where he categorized his patients by their physical or "racial" traits.  In this group were individuals which he felt displayed the features of the Mongols of China;  these became known as "mongoloid". Just prior to this, he had made the distinction between "cretins" (those found do have hypothyroidism) and "mongoloids".  Later on his sons would join him in his practice and continue to explore "mongolism". 

"Mongolism" was the most commonly recognized learning disorder by the early 20th century;  most people with the disorder lived out their short lives in institutions.  As Eugenics became popular, many countries including the US had forced sterilization programs for those with learning disabilities.  Nazi Germany adapted Aktion T4 which led to the systematic murder of hundreds of thousands who were judged "incurably sick, by critical medical examination".  

There were many theories about the origin of DS at this time, including maternal age, inheritable traits and accidents during birth.  It wasn't until 1959 that Jérôme Lejeune discovered the karyotype and subsequently, Trisomy 21.  

In 1960, Dr. Paul Polani discovered translocation and a year later Dr. Clarke discovered Mosaic Down syndrome.

Shortly thereafter, with the onset of genetic testing, it became the norm to institutionalize all people with learning disabilities, including Down syndrome.  The children were removed from their parents, before any bonding could take place and sent away.  I have shared this quote before but feel it is needed again;  this is the mother of a child with Down syndrome.
"Jason was born on June 27, 1974, and was diagnosed as having Down syndrome when he was only a few hours old.  Like many other parents, my husband, Charles, and I were told by the doctor, "Your child will be mentally retarded.  He'll never sit or stand, walk or talk.  He'll never read or write or have a single meaningful thought or idea. The common practice for these children is to place them in an institution immediately."  The doctor went so far as to say, "Go home and tell your friends and family that he died in childbirth.". 
Other professionals were consulted reinforced this philosophy.  One psychologist suggested that raising a child like this would put extreme pressure and strain on our marriage and that the constant disappointment over the years would surely destroy our family."
(Taken from "Count Us In:  Growing Up with Down Syndrome" by Jason Kingsley and Mitchell Levitz, two men with Down syndrome.   This is an excerpt on page three of the introduction, written by Jason's mother Emily.)

A Comparison of the Growth and Development of Institutionalized and Home-Reared Mongoloids During Infancy and Early Childhood was written in 1964 by D.J. Stedman and D.H. Eichorn.  This study opened the door for de-institutionalizing North America.  They found that depriving children of the basics of a steady significant caregiver and stimulation caused cognitive scores to drop even lower than those with Down syndrome alone.  They showed the medical community that those with learning disabilities have both emotional and physical needs that require fulfillment which in turn, fosters development. 

The Mongolian delegate successfully appealed to The World Health Organization in 1961 to drop references to "mongolism" and by 1969 "Down's Syndrome" was becoming more widely used over "Mongolian idiocy".   By the middle 70's, less and less children were being institutionalized and new advances were being made in pediatric medicine.  In the 1980's the average life span had increased to 25; in 2011 it is now in the 60's.

A Brief History of Down syndrome: Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7


  1. Very interesting, love interesting, love gaining knowledge and that was very good. I need to learn all I can about Down Syndrome. started a page on it.

  2. Thank Zeus for steadman and Eichorn, but really most of my appreciation goes to those parents who went against the grain, those who fought institutionalization and didn't accept what every single field of medicine or sociology was telling them, the true pioneers and trailblazers.

    Leaves me to wonder though, who comprises that small minority of the pioneers and trailblazers today and what is 'going against the grain' now?

  3. I just read the T4 wiki and I am so depressed now. Not that I didn't know about it before, but to really read the details just makes it worse.

  4. You may want to skip part 6 then. I describe Aktion T4 in detail, from its creation to the end. Part 7 is worse.

    It is sickening.
    We need to never forget these atrocities.

  5. So much of this is new to me; thanks for sharing. In particular, I didn't know that there was so much recent history to Down's Syndrome, and changing lifespans.


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