27 Nov A “cure” for Down syndrome? – reader feedback #2

Shortly after I posted Jenn Power’s comments, a friend asked, “What if it were autism instead of Down syndrome — would you hesitate then? As if in reply, Contrarian received this email from David Croft, a Dartmouth father of two autistic children:

Sure, there are aspects of autism that I would like to better control in the boys.  There are manifestations that, if they were removed, would make the boys more functional and easier to handle – but would the removal of these aspects likewise involve the removal of aspects of the boys that make them them?

David’s full comments after the break.

Thanks for this blog, Parker – I had no idea that such a breakthrough had recently been made with Down Syndrome and, further, that there might be a part of the Down Syndrome community that might not want everything a “cure” suggests.

I may be comparing apples with straw hats here, but my own children are autistic, and this debate rages within the autism community.  I have said it many times before, and will reiterate it now: If a cure for autism was announced today, I emphatically would not give it to my children.

Sure, there are aspects of autism that I would like to better control in the boys.  There are manifestations that, if they were removed, would make the boys more functional and easier to handle – but would the removal of these aspects likewise involve the removal of aspects of the boys that make them them?

Gabe and Izaak are generally happy and loving boys, with incredible memories and an intense love of visitors.  They are musicians and readers.  Nobody’s laughs are more infectious than theirs.  I may not always understand what they are laughing at, but I am often laughing with them.  I sense that Gabe has a novel in him some day, while Izaak will some day become a one man band.  Would “curing” autism cure them of  all the positive aspects, too?  I fear so.  Mostly, I fear that curing autism would cure them of being Gabriel and Izaak, and that is one cure I can do without.

There is a divide in the autism community to be sure, and I expect I am in the minority.  But not in my immediate community.  Someday Gabriel and Izaak will know enough about themselves and enough about autism to make a decision of their own, should a cure come along.   But for now, almost all the adults I know with autism and with Asperger’s (myself included), shift uncomfortably in their seats at the mention of a cure.