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

  1. Wow, what a question Deanna. I understand where you are coming from on this, and I honestly don’t know how I’d feel about the cure if it were my child. I’d like to think that they would still have the same personality and abilities after the cure. From what I’ve heard some autistic children and adults suffer terrible confusion via too much noise impute and that it drives them to distraction and outbursts. (I can’t imagine the horror of that, I have a very peaceful mind.) I think if you had a little one dealing with that kind of autism you’d want them cured so they wouldn’t have to suffer the pain of that.

    Very thought provoking post.

    1. You have brought up a great point Elizabeth, one that I”m surprised I didn’t consider when writing this. There was a time, when my son was between 6 and 8 that he would suddenly, with no provocation that we could see, bolt out of the house and into the street; our poor babysitter almost had a nervous breakdown because of it. It wasn’t until he was about 12 that he was able to tell us why he did that – apparently he could hear the sound of the lights (you know how, once in a while, we hear that “buzzing” in lamps) so well that he felt it was chasing him and he had to get away. Many many people with autism have extra powerfully sensitive senses, they can see, hear, taste, feel everything at least ten times greater than we can. I know what this feels like myself, to a degree, because fibromyalgia presents the same challenge, but at least I know when it’s coming and can prepare for it. I can’t imagine being a child and having to deal with such horror, not knowing why in the world it’s happening.
      Anyway, your comment made me realize that, had such a “cure” been offered when my son was going through that stage of his illness it’s quite likely I would’ve said “Yes, please do anything to help him”. It’s obvious that growing older and having his psychologist help him understand this challenge, (and others), helped him to work past it, or through it I should say, but we’re quite blessed in that case, there are so many others who have not had such access to this kind of help. I am so very grateful to everyone who has worked with us over the years!
      Gracious, I could’ve just posted another blog! 🙂 Thanks so much for your thoughts Elizabeth!

      1. I just remembered watching a short documentary on what young children experience with autism. There was one little girl who constantly screamed and fussed, and held her hands to her ears almost 24-7. It was heart-breaking. It helped me realize that not ever kid having a tantrum in the store or restaurant was just being fussy.

        Hubby and I were in a restaurant the other day and there was a boy of about 7 creating such a fuss. He was crying and hitting out at his mother, who was the epitome of grace-filled patience, and who quietly and tenderly voiced her instructions to him. I knew from their behavior he was autistic. And the funny thing, or maybe I should say the best thing about it all, nobody in the restaurant, which was full, seemed bothered at all. I thought that was wonderful. 🙂

    2. Elizabeth I remember (barely) before I had children that kids who made a fuss in public irritated me to no end and I’d whine and complain that their parents were just sitting there doing nothing to correct their child and it made me so mad I wanted to walk up to them and tell them exactly how to take care of the situation. I’m ashamed at how self-centered I was then. It’s amazing what having children ourselves can do to our personalities!

    1. Yes John, it does sometimes wear me out, especially if I’m experiencing fibro fog, but I am so glad he’s like this and that his teachers and other mentors not only know this about him but also take the time to listen to him and do their best to find the answers. We are truly blessed.

    1. I guess it’s hard to understand how a “cure” would work because of the infinite possibilities, ones we may not see in our lifetime but, (I believe), our children and grandchildren will likely get to watch. It may be scary but it’s exciting at the same time.

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