Why is it called “Down syndrome”? (Or, why I wish there had been a Dr. Awesome)

John Langdon Down (not Dr. Awesome)

John Langdon Down
(not Dr. Awesome)

October is National Down Syndrome Awareness Month. Yesterday concerned what Down syndrome is. Today is the first of two posts on why it is called “Down syndrome.”

Before my daughter was born, I had always assumed that “Down syndrome” was called by that name as a description of the condition. Turns out I was wrong.

The label “Down syndrome” is not meant to describe those with the condition as being “down” or delayed. Rather, like many medical conditions, it is named after a physician who described the condition.

In the 1860’s, Dr. John Langdon Down published a paper describing a certain subset of his patients at the Royal Earlswood Asylum for Idiots (as it was called at that time). He described these patients as:

The Mongolian type of idiocy occurs in more than ten per cent of the cases which are presented to me. They are always congenital idiots and never result from accidents after uterine life. They are, for the most part instances of degeneracy arising from tuberculosis in the parents. They have considerable power of imitation, even bordering on being mimics. They are humorous and a lively sense of the ridiculous often colours their mimicry. This faculty of imitation can be cultivated to a very great extent and a practical direction given to the results obtained. They are usually able to speak; the speech is thick and indistinct, but may be improved very greatly by a well directed scheme of tongue gymnastics. The co-ordinating faculty is abnormal, but not so defective that it cannot be strengthened. By systemic training, considerable manipulative power may be obtained.

In that era when Charles Darwin and the theory of evolution were new, Dr. Down theorized that these patients were a “regression” in the evolution of man. Because their physical appearance reminded Dr. Down of people from Mongolia, he termed the condition “Mongolian idiocy.” The condition was known by this name, or shortened to referring to the individuals with the condition as “Mongoloids.”

In 1961, the medical journal Lancet ran a letter from noted geneticists calling for a re-naming of the condition:

It has long been recognised that the terms ‘Mongolian Idiocy’, ‘Mongolism’, ‘Mongoloid’, etc as applied to a specific type of mental deficiency have misleading connotations. The importance of this anomaly among Europeans and their descendants is not related to the segregation of genes derived from Asians; its appearance among members of Asian populations suggests such ambiguous designations as ‘Mongol Mongoloid’; increasing participation of Chinese and Japanese in investigation of the condition imposes on them the use of an embarrassing term. We urge, therefore, that the expressions which imply a racial aspect of the condition be no longer used. Some of the undersigned are inclined to replace the term Mongolism by such designations as ‘Langdon Down Anomaly’, or ‘Down’s Syndrome or Anomaly’, or ‘Congenital Acromicria’. Several of us believe that this is an appropriate time to introduce the term ‘Trisomy 21 Anomaly’, which would include cases of simple Trisomy as well as translocations. It is hoped that agreement on a specific phrase will soon crystallise once the term ‘Mongolism’ has been abandoned

The editor selected “Down’s syndrome” and the World Health Organization confirmed that description for the condition in 1965. And, that is how “mongolian idiocy” became known as “Down syndrome.”

As a parent, I have long wished that the good doctor who wrote of his patients had had a different surname. The Lancet authors acknowledged the negative associations a condition’s name can give it. I expect many if not most people actually believe those with Down syndrome are called that because their IQ’s are lower–or “down”–from what is considered typical. Imagine what effect it would have on those living with Down syndrome and on parents first receiving the diagnosis if Dr. Down had instead had the name of “Dr. Awesome:”

Doctor delivering the diagnosis: “I need to talk to you about some symptoms we’ve observed. We suspect that your child has Awesome syndrome.”

Principal talking to school teacher: “I wanted to let you know about a new student who will be in your class. You see, he has Awesome syndrome.”

Human resources director talking with employer: “Thank you for meeting with me. I wanted to talk to you about a new employee that we are hiring. Her name is Jennifer and she has Awesome syndrome.”

But, of course, John Langdon didn’t have the last name of “Awesome.” Instead he was Dr. Down and that has become the medical term to describe a condition caused by an extra 21st Chromosome.

A postscript: Dr. Jerome Lejeune discovered the genetic cause for Down syndrome in 1958, publishing his paper on his discovery in 1959. That was known at the time the World Health Organization chose instead to pay homage to Dr. Down. Too bad. Because I also think had the condition been called Lejeune syndrome or Trisomy 21 (both suggested in the Lancet) there would be a much different experience for those receiving a diagnosis of Lejeune syndrome or Trisomy 21, instead of Down syndrome.

Comments

  1. Karen Prewitt says:

    🙂 sharing!

    • Denis J Meyer says:

      If it was named after a man named Down, why isn’t it called “Down’s Syndrome”?

      • That is how it is referred to in the British Empire, with the possessive “s,” but a decision was made in America that because he did not “own” the syndrome, but rather was the person who first described it, it would simply be referred to as “Down syndrome.”

  2. Thanks Mark, especially for the ‘awesome syndrome’ bit – it would be more appropriate, wouldn’t it?

    But do you really think the name makes that much difference to people’s perception?

    • I think going from “mongoloid” to “Down syndrome” improved the perception of the condition and I think going from “Down syndrome” to “Trisomy 21” would be accurate and result in a reexamination of preconceived notions of what is associated with that genetic condition.

      When President Obama signed Rosa’s law, the federal law replacing “mental retardation” with “intellectual disability,” he quoted Rosa’s brother Nick saying “What you call people is how you treat them. If we change the words, maybe it will be the start of a new attitude toward people with disabilities.” The President went on to say, “that’s a lot of wisdom from Nick.” I agree.

      • I agree that replacing ‘mongoloid’ was a good thing, and I detest the ‘r’ word, so I admit you may have a point about the word ‘down’ as well.

        So I agree these things are important. But I also wonder if we sometimes attend more to being polite than making substantive changes? To take a parallel case, racist language has long since become socially unacceptable but racial inequality is still with us. On the surface we look like a non-racist society but the reality is different.

        Thanks for all the work you do on this blog, btw. It’s useful and important stuff.

      • Rebecca Evoli says:

        When my brother was born 63 years ago. They still called it Mongaloid. The doctor wanted my parents to put my brother in a institution. They did not and so my brother is the oldest out of 6 siblings. He has lived at home his whole life. Except this last year when fell and broke his hip. Thank you for sharing the information.

        • Your parents were trend-setters, which led to the change in practice once it was shown how children with Down syndrome excel when brought up in a loving home as compared to being institutionalized.

  3. Sandra Levitt says:

    I am forwarding this, as I hope people will read and get a better understanding of Down Syndrome. When my Daughter was born 31 years ago, I was told, she would never walk, talk or live beyond 3 or 4. The Dr. also informed me I had given Birth to a Mongoloid and did I know what that is, before I could answer he said sheis retarded and you should pack your bags and go home and we will take care of everything else, as a couple such as you should not have a child like this. I was blown away of how this Dr. was communicating with me.

    So please everyone gain some knowledge “R” is not for Retarded it is for RESPECT- Tina Turner can sing that one for you. The term used in todays age is Intellectually Disabled.

    Our Daughter is no different than anyone else, so please the next time you see an Intellectually Disabled person, say Hi to them! and introduce yourself, compliment them. As you are the population that can ‘MAKE A DIFFERENCE.

  4. Patience Virtue says:

    I have always associated downs syndrome with goose down, not with down low. Like down pillows for fun, downy softness, goosedown blankets for warmth. But I came up with this distinction as a rather imaginative child.

    • Stella McLeod says:

      Patience, that’s exactly how I think of “down” as well – soft and cuddly – in part because I had a down filled quilt as a child. I guess it also helps that I got to know children and adults with Down syndrome as people before I knew much about the condition. Also I don’t know why the apostrophe s got dropped from Down’s which made it more obvious that the syndrome was named after someone, and not an adjective – which occurs in other conditions, e.g. “scarlet fever” (which is named after the red rash) .

      • A good question about that apostrophe being dropped.

        • I have always preferred the apostrophe,which I consider correct English while leaving it out is probably an internationalizing move.

          • I’ve never had strong feelings one way or the other, except I do prefer people saying my daughter has “Down syndrome” versus “Down’s” and the apostrophe would likely encourage the latter description. Doctors often describe people with Down syndrome as “having Down’s.” Not sure if it’s just for the sake of brevity, but it comes off as less than respectful of saying what the actual condition is.

      • The ‘s is still there in the UK. I’d noticed this before. Wonder why it was dropped here.

    • Linda M Boyer says:

      I always thought of it like someone else said…as soft down.

  5. Melody small says:

    I agree about the last name. Although our son who was diagnosed with DS at not quite two weeks old is only 6 and a half weeks old now, we wouldn’t trade this little boy for anything in the world. He is such a blessing and a wonderful baby and we can’t wait to experience all the other joys he will bring us. He’s no different from any other baby his age; if fact, even though I’m bias because I’m his mom, I think he’s the best baby I’ve ever met! Regarding the apostrophe, the below is from the National Down Syndrome Society at http://www.ndss.org/Down-Syndrome/Preferred-Language-Guide/. Happy National Down Syndrome month!

    USE THIS LANGUAGE WHEN REFERRING TO DOWN SYNDROME AND PEOPLE WHO HAVE DOWN SYNDROME:

    Down vs. Down’s – NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome,” as well.

    – See more at: http://www.ndss.org/Down-Syndrome/Preferred-Language-Guide/#sthash.QrhiS0UG.dpuf

  6. I used to lament that Dr. Down was the man who first explained and named T21, wishing he had had a different last name. But then I read more about John Langdon Down, and found out that he was quite a brilliant man, and he could have made a name for himself, but instead he dedicated his life to the children in his care. He was ahead of his time, really, because he worked to teach children with developmental disabilities and give them skills that the world of his day denied such children. Now I consider the name as an honor to an honorable man.

    But as a journalist, I would not mind a name change. Down syndrome is a problem for writers. You are to focus on the person, so you are not supposed to write “Down syndrome child,” but “child with Down syndrome.” That’s fine, but it can get unwieldy. Autism has an adjective–autistic–and it can be used before a noun without the disability world getting upset. You can say, “autistic child.” But you can’t say, “Down syndromic child.” Using “Trisomy 21” for “Down syndrome” doesn’t solve that problem.

    .

    • Aside from the “regression” theory that led to his description of the condition, I, too, think Dr. Down deserves to be honored. And, like you, I think a different name is nonetheless needed. Perhaps, “T21,” which is both accurate and shorter, e.g. “a child with T21.”

  7. I think the name should again be DOWN’S SYNDROME. That is clearly named after the doctor who discovered it.

  8. In 30 years “intellectual disability” will, in all likelihood, carry with it the same negative connotations that retarded does today. Is retardation not a term reflective of a hindrance? Is intellectual disability not also representative of a hindrance? In all honesty I think it is time to focus on the value and beauty of individuals rather than the nomenclature used to describe them. Retard or intellectually disabled? Who the fuck cares, focus more on treating people as people and less on how you classify them.

    • Right because if you took that position with a racial or sexual orientation slur, I’m sure you’d find out immediately who the F cares. But I support your general view that the paramount concern is how you treat someone. That should also include how you refer to them.

      • To be clear, I do not agree with the derisive use of any term used to impart preconceptions on any individual or group. my quarrel is with the culture that attaches hurtful and ignorant associations to a medical descriptive, not the word itself. Changing the phraseology will help for a while, but in effect it will do little more than distract from the true problem. Stop worrying about the word and give more consideration to the perception of the conditions described by it. If this does not happen, the term mentally disabled will eventually be doomed to the same fate as mental retardation.

        • I tend to agree with Lennon. I have Graves’ Disease, which generates similar comments. I think it’s silly to get hung up on the name. My disease is named for another brilliant physician named Robert James Graves.

  9. Thank you all for enlightening me about the term DS and its origin.. I read all the thought provoking ideas of this ailment as I was very sad to learn today about my friend whose forthcoming baby is diagnosed with T21… I have a child and as a parent I understand how much it hurts to know how this upcoming child will be welcome by the society.. Thanks that we live in a more civilised world where at least the R word has been phased out .. I hope this kid will bring more happiness to my friend’s family and will have a dignified life…

    • Kam: I would refer you to this link at Downsyndromepregnancy. It has a book for expectant parents and a book for their loved ones. Both are available for free as .pdfs, or you can order hardcopies through WoodbineHouse. I hope they are helpful as your friend awaits the arrival of her child.

Trackbacks

  1. […] Down Syndrome Awareness Month. In previous posts, I’ve discussed what is Down syndrome and why the condition is called “Down syndrome.” But why is it a […]

  2. […] was a relatively modern condition, given that it was only identified in the mid-1800′s by John Langdon Down. In support of this “modern theory,” one commentator noted how individuals with Down […]

  3. […] for people with Down syndrome used to be “Mongoloid.” The time period was coined by the use of Langdon Down, who believed his sufferers resembled Asiatic barbarians. because that received here to be regarded […]

  4. […] decades, a tenure used for people with Down syndrome was “Mongoloid.” The tenure was coined by Langdon Down, who believed his patients resembled Asiatic barbarians. Since that came to be deliberate annoying […]

  5. […] decades, the term used for people with Down syndrome was “Mongoloid.” The term was coined by Langdon Down, who believed his patients resembled Asiatic barbarians. Since that came to be considered […]

  6. […] decades, the term used for people with Down Syndrome was “Mongoloid.” The term was coined by Langdon Down, who believed his patients resembled Asiatic barbarians. Since that came to be considered […]

  7. […] decades, the term used for people with Down syndrome was “Mongoloid.” The term was coined by Langdon Down, who believed his patients resembled Asiatic barbarians. Since that came to be considered […]

  8. […] decades, the term used for people with Down syndrome was “Mongoloid.” The term was coined by Langdon Down, who believed his patients resembled Asiatic barbarians. Since that came to be considered […]

  9. […] The editor selected “Down’s syndrome” and the World Health Organization confirmed that description for the condition in 1965. And, that is how “mongolian idiocy” became known as “Down syndrome.” (This info was taken from Downsyndromeprenataltesting.com) […]

  10. […] civilization, individuals with Down syndrome have been hidden, ostracized, excluded from society. Langdon Down wrote his description of the condition which now bears his name based on individuals confined in […]

  11. […] It’s ironic that the guy’s name was “Down”, and perhaps unfortunate that it wasn’t something like, “John Langdon Self-Empowerment” or as Mark Leach pointed out in his 2013 article, “Dr. Awesome.” […]

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