The main criticism seems to be that I was being too pessimistic, or not giving the parents enough hope. Anecdotes about high functioning Down syndrome patients were used to convince me, I think, to give a proposed better outlook for kids with Down syndrome. I was accused of setting limits on what the child could accomplish. One commenter told me to stick to the medical facts and use up to date sources. Another said I had an "insulting and demeaning attitude" about Down syndrome. Hmmm.....am I really that much of a creep?
When I talk to parents of Down syndrome children I tell them congratulations and make comments about how cute their baby is, just like I do with parents of kids with 46 chromosomes. I agree that parents should try to optimize their child's development. I try to be as positive as I can, but I can't act like everything is hunky dory, as some commenters seem to want. I "dispense the facts of Down syndrome," as one commentor requested, and those facts are, as given in the 2006 edition of Smith's Recognizable Patterns of Human Malformation, that the average IQ is 25 to 50, perhaps lower in older patients. There is about a 40% chance of a heart defect. Sure there are some exceptions, but when I counsel parents I have to do so on the basis of facts and studies, not on the basis of anecdotes about exceptions.
There are no parents who take the news that their child has Down sydrome as good news, regardless of how it is presented. They universally consider it bad news - many of them go through a grieving process - and that's not because we present it in a negative way, that's because the news that your child will have intellectual deficits and a higher risk for things like heart defects, leukemia, and atlanto-axial instability is not good news. And the way to give bad news to parents is not to try to cheer them up with anecdotes about exceptional high achievers, but to give them accurate information and point them in the right direction for optimizing their child's development.
Should I modify my talk so I tell parents that there are some unusual exceptions who go to junior college? Maybe, although I'd like better evidence than a comment on a blog that it is true. Also, please realize that in my patient population it is more common for a young black man to go to jail than to college. Those exceptional cases who go to college aren't likely to come from my patient base. Perhaps I should just say that with optimal developmental stimulation some Down syndrome kids are doing better than historically we thought they could.
I don't have much good to say about people who discriminate against those with disabilities, but neither do I have much use for doctors who wimp out on tough conversations with families by giving overly optimistic information. The commenter Karrvakarela said it best: "There is no room for false hope but we need to advocate a positive attitude to the condition."