Are People with Down Syndrome Severely Mentally Retarded? As part of Down Syndrome Awareness Month, I’ve created a series to expose some myths about Down syndrome.
Myth: People with Down syndrome are severely mentally retarded.
Most people with Down syndrome fall within the mild to moderate range of intellectual disability, as indicated by scores on an IQ test (individuals with the mosaic form of Down syndrome typically score 10-30 points higher, which places many of them in the “normal” range of intelligence). As you’ll see below, however, IQ tests may not tell the whole story. Note: the preferred terminology today is “intellectually disabled,” primarily due to mainstream society’s co-opting of the r-word as an insult.
Deconstructing the Myth
The Origins
Beginning in the 1920s and continuing into the 1960s, medical professionals strongly encouraged parents of children with Down syndrome to place them in institutions. IQ testing of individuals who were raised in these institutions seemed to back up the belief that they were severely intellectually disabled. In 1964, Stedman and Eichorn compared children who were raised at home with those who were institutionalized and were able to demonstrate that the home-reared children fared much better than their institutionalized peers.
Recent history suggests that while people with Down syndrome do learn at a slower rate than their chromosome-typical peers, both medical treatments and educational interventions can play a dramatic role in increasing learning. At one time, it was believed that children with Down syndrome “plateaued” and learning stopped, but that’s been proven untrue in recent decades. Although institutionalization began to be phased out in the 1960s, both early intervention programs and mainstreaming in school are still relatively new, and much of the data available to researchers today is based upon people with Down syndrome who did not have the opportunity to benefit from inclusive schooling.
The Rest of the Story
People with Down syndrome often have health issues such as congenital heart defects, hypothyroidism, and gastrointestinal problems. Children with Down syndrome are also at greater risk for respiratory infections. These health issues have the potential to impact both IQ test scores and development in other areas, and are cited by critics as possible causes for lower scores which do not reflect the true intelligence of people with Down syndrome. (Didn’t you ever get a lower score on a test because you weren’t feeling well?) Additionally, traditional IQ tests fail to measure other aspects of intelligence such as creativity and emotional intelligence.
There is no question that Down syndrome causes developmental delays. What is debatable is to what degree those delays are predetermined and fixed, and if not, how well they can be overcome. Although the true level of intellectual disability of people with Down syndrome is up for debate, one thing is not: the belief that all people with Down syndrome are severely mentally retarded has its roots in the soft bigotry of low expectations.
How do you feel about “the rest of the story?” Do you believe that people with Down syndrome are capable of more on a cognitive level that previously thought? Tell me!
Other Posts in this series:
Are People With Down Syndrome Always Happy?
I truly believe that my daughter is capable of so much more than people have given her credit for and I think some of it maybe that people tend to lower their expections because of the diagnosis. Maybe as parents we have refused to lower our expections for our children which in turn has had a positive effect on their cognitive abilities which was not the case years ago. Just food for thought.
Very interesting. Thanks, as always, for the enlightening post.
Shasta – Even among children who are mainstreamed, there’s a tendency on the part of some teachers to “let them slide” because they don’t expect as much from them as the other, typical, kids. It’s not a malicious thing – in fact, in many cases it’s more like they’re letting the kids get away with doing (or not doing) things, including school work, because “they’re so sweet and cute” (I have been guilty of not reprimanding Nathan when I should because he made me laugh – it’s the same kind of thing).
Hello
I found you via the blog hop and I have been cruising around your site now. I really like yourr story!
Christina (Prince Vince)
Just wanted to leave a quick comment to say great blog, and I love the photos of your precious babies 🙂
Off-topic, I know, but as someone not inundated in American culture and not used to the word “retarded” being used as an insult, the phrase “intellectually disabled” seems much more offensive to me: retarded means delayed or slowed down, whereas disabled means limited or put out of action. Retarded speaks of the rate of progress, disabled implies limited or no ability.
I agree with Eleni.
“Intellectually disabled” try fitting that into your conversation.
“My son was born intellectually disabled”.
And who would go around saying that their child is retarded?
No one does, instead they say “My son was born with down syndrome”.
It’s honest and straight to the point without being fussy.
It also sounds easier for other people to understand.
Any time anyone said to me that one of their family members had down syndrome, the first thing that enters my mind is “I understand”.
“Intellectually disabled” doesn’t sound natural at all and makes anyone who uses it sound like a fake.
I remember when I was in like 3rd grade a motivational speaker came to speak to our class and she had mild down syndrome. She did not tell us this right away and had she not I honestly think we would have never known! She actually graduated college witb a BA degree and owned her own home. So my question is, do all people with this syndrome have the capability to accomplish this or is it based on their early level of diagnosis, like if they are on the severe end they probably won’t go as far as those on the mild end? That woman seriously not only achieved so much more than many “normal” people but her social skills and behavior was extremely normal, she did not act awkwardly in any way the ONLY sign she showed were the physical aspects and even then very mildly.
It really depends, Sarah Lynn. People with Down syndrome benefit as children from early intervention services and from inclusion as much as possible in mainstream classes. Most have some level of intellectual disability, but most also have the ability to learn – but the conventional methods may cause them problems (for instance, it is common for people with Down syndrome to be visual learners, so they may struggle with more abstract concepts). Additionally, the level of intellectual disability falls across a wide spectrum – even wider when you include individuals with the mosaic form of Down syndrome. But yes, some people with Down syndrome do attend college and live independently.
Lovely blog Andi, thank you.
My mum had three kids before adopting me at 8 1/2 days old in early 1958. Two boys, David & Andrew, had Down’s and both died before age 5. The ‘normal’ one, a girl named Alison also died aged 4 1/2 with leukaemia. All 3 died before I was born.
At the time I was adopted, mum was 6 months pregnant and when Paul was born, guess what? Down’s too. The nursing staff kept that fact from her for days and then he was quietly spirited away.
We used to visit him in a quite pleasant institution, 30 miles away, every few weeks and, during the long holidays, Christmas etc., he would come and stay with us. For me and my sister, adopted in mid 1959, Paul was just ‘our brother’ a fun-loving kid that we never felt ashamed of when the other children used to make fun of him. Later he was moved to another, less pleasant, home that smelt of urine and neglect. I stopped tagging along with the, by then 3-weekly, visits at the age of 8 as I hated seeing the place. Paul would come and stay with us more frequently as he got older, but he was never a fixture, much as Louise & I loved having him around. I’m sure mum & dad loved him very much too, but the loss of the other children must have been a great burden.
When he was about 20 years old, my dad managed to secure a place for him in a managed home in our own town. He started working, cleaning jobs in places like McDonald’s etc., and could come and go as he pleased, within reason, although he had to be ‘rescued’ a number of times when some people thought it would be amusing to take him to the pub to see how he coped with alcohol (something he relished I should add).
He’s about to turn 56, a ripe old age for a guy with Down’s, and is as strong as an ox, but he’s very markedly affected by OCD and can’t cope with anything outside his normal frame of reference nowadays.
It’s understandable that mum acquiesced in Paul being institutionalised and I’ve never judged her badly for it, but I can’t help wondering how well his intellect would have developed had he spent his childhood with us.
When my wife and I were expecting our child, almost 20 years ago now, the ante-natal nurse was quite surprised when we turned-down the offer of an amniocentesis. The test is not without risk and the result wouldn’t have made a difference, aside from maybe preparing us. The prospect of raising a child with Down’s Syndrome wouldn’t faze me in the least. In my experience, they are among the most loving human beings I’ve ever had the privilege to spend time with.
Thank you so, so much for sharing your experience. It sounds like your brother has always been a valued member of the family, even when he wasn’t living in house with you, and that has certainly contributed to the success he has had. Many children with Down syndrome then (and even today, in many countries) were effectively abandoned in those days, causing pain both for them and for the families who left them behind.