when was the term Down Syndrome introduced.

[misdee]

gueniue question, i was flicking through my late grandads medical book from the 50's and it had references to mongol children (totally un-pc in my views). so when did it change to DS? was it after they found out about the chromosone abnormalities? does anyone know?

also it had things about cretins as well. which confused me.

never look though 50's medical books, tho the photos of the hospital and equipment in it, was interesting.

i never knew it. they only time i heard it used was in a degroatry way.

I can remember after Amelia was born (she has DS for those of you that don't know) I got a few books from the DSA's list of recommended reading.

I sat there and started to read the first chapter, basically it was all about DS in history,it mentioned ancient art and then it talked of terminology.

I can remember nearly falling of my chair when I saw the term "mongol!" It has already been mentioned, but I was born in the 60's and I remember the term from when I was a child....but TBH I had forgotten all about it. I read a bit more but I soon realised this was not the book I really wanted, or needed to be reading when you have a newly born, beautiful, heathy daughter....who just happen to have DS!

in a hall we go to for our music class there is still a (very old, battered looking) box saying "give to spastics". make me go every time i see it.

I remember clearly the terms spastic and mongol being used to describe medical conditions with no offence intended.
I also remember the terms "spas" and "mong" being used, and still witness it, as insults towards those who have been e.g. a bit dim. Children at my school sometimes use them and are quite genuinely shocked and embarrassed when told where the words originate.

I wonder if the problem with short descriptive words like cretin and spastic is that they are easily appropriated by crass people to become insults. It's presumably less easy to adapt something very medical sounding like congenital hypothyroidism and turn it into an insult. Not impossible, I know, but less likely maybe?

didn't lady Warnock make a contribution to these changes?

Actually I just thought about it and realised that the reason these terms are offensive, and things like Down Syndrome aren't, is that the old terms label individuals, and not conditions. Obvious really.

It's also strange which of those words seem most offensive when used derogatorily. I grew up with the words 'mong' and 'spas' as freely used playground insults and would never dream of using them now I know where they originated. But those words were still in general use as professionally descriptive terms, too. But by the late '60s people were not professionally referred to as 'cretin' or 'moron' , they had fallen out of general use and so seemed to have a diluted meaning when used to be rude to someone.

So whilst I would condemn the word 'mong' and 'spas', I still describe some forms of behaviour as 'moronic' quite happily

And when was 'stupid' a diagnostic word? It seems pretty harmless now but must have meant 'mentally defective' at some point. What I'm suggesting is that time is the difference - and that recently disused words ae more offensive than those dropped decades ago.

Yes, I agree. Idiot was certainly a medical term that I use without really thinking. I guess it's not just that it's older though, but more general, like "mad", and not labelling individuals with a clearly defined condition?

I was really disappointed to hear the word 'spas' used this week, as a derogatory term, by people in their late twenties. I was gobsmacked by it.

Remembered the other term in the interim - it was imbecile. That was also a medically defined term.

None of these terms were originally offensive, they were medical. (Although I can remember being confused when I was told that my new cousin was a mongol, because instantly pictures of Genghis Khan and his mongol hordes sprang to mind. I must have been five at the time and the only reason I knew about Genghis Khan was because one of the kids I played with was Turkish and his name was Genghis, so we knew why.)

the pead who DX my twin girls said....they SUFFER from autism and mental retardation, we were shocked, do people still say retardation?
me and hubby joke that it's not them that suffer, but we do.

Mongol was the term that I was bbrought up with, even in the "Mentally handicapped home" that my best friend's parents managed.

onlyjoking. I was at a craft fair a few weeks ago, watching a puppet show. There was a young girl watching who had apparently visited every show they had put on at this venue for at least 5 years.

After the show, I got chatting to the puppeteers ( a husband and wife team) and the lady said to me "That little girl has been visiting for years. She's what makes this worth while. She's obviously retarded and a bit backward, but very sweet"

I was gob-smacked and so shocked that I didn't respond. I wish I'd had the guts to correct her terminology.

I have to admit that mental retardation is used throughout medical literature and is not seen as non-PC because it's simply used as a technical term.

oh yes backwards, have heard that one a few times, took my girls to see pinocchio puppet show last week it was fab, one of my girls has been obbsessed with pinocchio for many years.

This bit made me boggle:

1999!!!!!!

Think you are spot on Tamum - think the previous names for disabled individuals became abusive taunts because they labelled individuals.

It is interesting though, because I do find that I have to temper my explanation of ds2's difficulties depending on which generation is asking and how much I want them to know.

Global Developmental Delay, for lots of people, seems to mean that he will eventually catch up.

Special Needs - well, they tend to equate that with behavioural stuff and stuff like dyslexia.

Learning Disability - blank stares while they mull it over in their minds `mentally retarded?'

I hate the bluntness, harshness and `slap in the face' quality of mentally retarded - but unfortunately when it has really needed spelling out to someone I have had to use it.

Also think that mentally retarded seems more offensive than backward', because again it is associated with that label thing' of `Retard' Yuk, Yuk, Yuk!

That's interesting, isn't it Merlot- although I see mental retardation used all the time, and don't blanch, for some reason mentally retarded sounds awful and makes me shudder. I suppose it sounds like a judgement in a way, rather than a symptom (which is how I think of mental retardation). I can see how hard it must be to explain to people. Are you anywhere closer to a definitive diagnosis?
xx

Hi Tamum

A little closer me thinks.

Ds2 most probably has not got Sotos - nearly all tests back.

Angelmans has also been ruled out 99% For the reasons you gave me...and...his fish test came back normal. The only test they havent done for Angelmans is the uniparental disomy one. What they did say though is this:

As my hubby has an anomaly on the 15th chromosome that shows up under standard resolution testing - the chances of ds2 inheriting 2 chromosomes from him without any obvious abnormality was even more obscure than normal iyswim. Also of course, they dont see any clinical resemblance with Angelmans. Have to say - ds2 is now walking and his arms are slowing coming down by his side and so the resemblance is less apparent to me. Also, he is so big. He is off the 100th percentile line for height and head circumference.

Latest thoughts from geneticist is that ds2's condition is most probably genetic because:-

He has 3 soft markers (one kidney, tapering fingers and overlapping toes) - not significant on their own, but combined with the overall picture of developmental delay it is her gut reaction. Have to say it is also mine.
She is pinning her hopes on the tests on the telomeres - have to say its been a bl**dy long time now (10 months!!)

She has also suggested that ds2 joins Dr Rahman's (sp?) Overgrowth Study - as she feels that this is his most significant trait. He has just turned 2 and is fitting tops designed for 4-5 years (help!)

Thanks for asking Tamum and thanks so much for letting me run my fears by you in the early days. Much appreciated

...oh and dh's sister has agreed to see a geneticist to see if there is any genetic link. She is so sweet and we have had to be so diplomatic, I just hope the experience doesnt upset her. She is under the impression that they are looking to see whether her deafness may have been inherited by ds2 (not all the other stuff)

merlot, my dd2 was fitting clothes for 4-5 at the age of 2, she seems to have slowed down tho. is there an overgrowth syndrome that also coincides with AS traits at all? its always been at the back of my mind about her excellarated growth and if that could be connected with her other problems.

Hi Misdee

Children with Soto Syndrome can have AS type traits - see HERE

Our ds2 has been tested for this, but it looks as if the results are negative. Interestingly, though, although he doesnt have all the facial similarities a great deal of the description could apply to him. He also has some AS traits.

I think the whole difficulty with making an accurate diagnosis is that there is such a tremendous overlap with a lot of these conditions. For example, if your child cant speak (for whatever reason) they are bound to feel frustrated etc..

bump....for Tamum and Misdee