Tag Archives: clinical studies

Can we rid the world of Down’s Syndrome, of Pervasive Developmental Disorders? Would we want to? #autism #autismawareness

It’s been several years since I read Elizabeth Moon’s The Speed of Dark but it’s the first thing I thought of when reading this article about the forthcoming possibility of curing Down’s Syndrome. The Speed of Dark is about a man’s struggle with whether or not to participate in a study to “cure” his autism. Here’s the blurb from The Speed of Dark, via Elizabeth Moon’s website:

“Lou is a high-functioning autistic adult who has made a good life for himself and is, he thinks, content. But a new manager in the pharmaceutical firm for which he works decides to put pressure on the unit that employs autistic persons. Lou is pressured to undergo an experimental treatment that might “cure” the autism he doesn’t think needs curing, or risk losing his job–and certainly the accommodations the company has put in place for its autistic employees.”

The ethical question that both the article and The Speed of Dark poses is: If you could cure the disease would you be willing to risk the possibility of basically erasing [the person’s] personality?

To be short and to the point, I wouldn’t. My son has High Functioning Autism, which is basically the mildest form of autism under the “umbrella” of Autism Spectrum Disorders. Although his autism caused many difficulties for him throughout his early school years, especially in social situations, with continual therapy and much hard work he overcame those challenges, and along that journey he became one of the most kind-hearted and intelligent people I’ve ever known. (Yes, the possibility of exaggerating that, as his mother, exists but others have expressed this opinion too).

One of the characteristics I love most about my son is his insistence at questioning everything, and when I say everything I mean everything. At times that can be frustrating of course, (mainly when I don’t know the answer and am unable to explain something to him), but I am rather proud of his persistence in investigating until he finds the answers he seeks. This trait makes for terrific philosophical discussions, something I’ve always enjoyed, even when the particular subject shoots way over my head. (He is 16-years-old now and as he discovers more and more about life this is often the case).

Because of this “need to know” my son has developed a dogged patience that I quite envy. When he wants to learn something, (he is very interested in software design and such), he sits down, he studies, and he learns it, no matter how long it takes. He is also quite a talented artist, not only using software tools but also with nothing more than pencil and paper, (something else I’m proud of considering how many teenagers are averse to doing anything that doesn’t require a computer).

If this sounds like a “mommy brag post”, well, I suppose it is, but the point is: should a cure for autism suddenly be discovered and offered to all people diagnosed [with a form of autism] I would not want my son to take advantage of it, I would not be willing to sacrifice the personality traits that make him the wonderful person he is.

What about you? If your child is living with autism, Down’s Syndrome, Asperger’s, etc., or if you know someone who is, would you be willing to risk the loss of their personality to “remove the parts of them” that present the challenges of living with such an illness?

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