Something(s) To Comment About
September 3, 2008 by Kristina Chew, PhD
Filed under Health
So as you may not, or may, have noticed, there is still some wonkiness going up with this blog. The good folks who handle are matters technological, software-related, and the like, have been working hard to migrate b5media’s blogs over to a new server and all should be well, webpages should load and updates occur, very soon. One (”adverse effect?“) of the server migration has been that the sidebar (to your right) has not been updating with recent posts and recent comments. So if a comment is left on a post written a couple weeks or months ago, unless you’ve decided to sit down and read every single post (which I don’t recommend; some posts are more post-worthy than others), some good comments will go missed. I’ve rounded up a few of them below, with a bit of my own responses, and many many thanks for everyone who reads Autism Vox and lets me know what you think.
Anatasia Hulke was found on Monday afternoon, after she’d been missing from her home since Thursday.Regan commented on a bulletin about educational policy from the National Down Syndrome Society and pointed out a Nova video about autism, genes, and a tale of two mice.
A post about late talking written in July continues to draw comments, including this one from John which argues that autism and other disabilities like dyslexia are currently over-diagnosed.
I would counter, they are being diagnosed more because we understand them more and can better identify them, and this notion of better diagnosis needs to be considered in investigating why the rates of autism in Somali children in Minneapolis have increased (here is a commenter, Ali, on this topic).
A commenter, Mindy, asked another commented about seizure medications, Sensory Processing Disorder in a post on sensible accommodations for sensory issues. A couple of friends have been talking on and off about the possibility of using medication for their children. My son’s been on medication since he was 7 and the decision to use it was not lightly made; the medications’ effects are carefully, continually scrutinized. (We’re going to visit Charlie’s pediatric neurologist on Friday to talk about this and some other things.)
The father of a teenage boy asked this question in a post on talking to oneself:
I’ve noticed my 16 yr old boy pace and talk to himself a few times. He is still a bit uncoordinated and has a tendency to walk looking down instead of his head up or stragit ahead. He has above average grades and excels in Japenese but he is a bit sluggish with physical acitivities. I’m a bit concerned becasue his mother (the ex) suffers from schizophrenia and his older brother devleoped a psychois at about 20 yrs of age but had bad grades and drug use may have contributed. Should I be concerned?
Some things I’d ask: Are the pacing and the looking down and the sluggishness long-time behaviors, or relatively new? Are these things affecting him in school or otherwise; does he generally seem happy and all right with things? If he only talking to himself, or also talking to others? Just some thoughts……
Another commenter, Jim Blair, asked me a question in the midst of a comment, quoted here in full; the original post was on prenatal testing (a topic of particular now because of whose youngest son, Trig, has Down Syndrome:
Kristina Chew says:
“And a life without Charlie is a life that neither I nor my husband Jim can imagine, nor would we want to.”
Hi,
Follow me in a hypothetical thought experiment. Imagine that your Charlie had been born a “perfect child” as seen by most people. Suppose he were to grow up to be–depending on your preference, an all star New York Yankee shortstop or Nobel Prize winning scientist. Call him Charlie II.
Would you then make the above quoted claim?
Now suppose that as the result of prenatal genetic testing Charlie I had been aborted and 6 month later Charlie II conceived. Think you would still choose the Charlie I that was never born to the Charlie II that was never conceived?
Of course not. Because we only know the things that ARE and not the things that might have been had we made different decisions.
I thank Jim Blair for taking the time to write out this thought experiment, though I find him to be a bit presumptive about how I would respond to his question. According to him, had I known via prenatal testing that Charlie (”Charlie I,” in the thought experiment) had autism, I would have chosen to abort him, thus making it possible for the conception and eventual birth of a most hypothetical “Charlie II” who would grow up to be an “all star New York Yankee shortstop or Nobel Prize winning scientist” and who, endowed with such an impressive future, would be a child that people would wish to have, and would indeed even consider to be a, if not the, perfect child.
I hope that Jim Blair keeps reading this blog (especially once the software issues gets resolved), as he will then find out why I know that Charlie is perfect and why there was no never any doubt in anyone’s mind that he, once conceived, would be born, and that whatever prior information Jim and I might have from prenatal genetic testing or other testing, we have always chosen to have him.
Always have, always will.
Sorry, but I find Jim Blairs’ question quite offensive and insulting, Kristina.
I have been reading about Charlie for a few years now, and I have got to know him really well through your blog. If only Jim had been reading your blog for as long.Then he would not have posed such a ridiculous and insensitive question.(You have the patience and grace of a saint Kristina) He would have seen how Charlie has brought such joy to your lives.
Made your lives even better than they were before!
That’s plain to see in your loving motherly effusions here.
Sure there have been tough times. Every parent has those, whether their child has special needs or not.
Does it matter who or what we are in this life, Jim?
Really?
What matters, is what is in a person’s heart.
To love and to be loved.
To care for others, and to be happy.
You sure as hell don’t need to be a nobel prize winner or a top athlete to achieve this end.
Sometimes, people who seem to “have it all” in reality have nothing .
In the eyes of God we are all equal.
Jim’s hypothetical is actually very similar to Peter Singer’s view of utilitarian euthanasia. Mr. Singer makes the same argument that “by euthanasia, a more productive citizen could be given a chance to contribute to society”. Its also straight out of the racial science reasoning of the Third Reich who believed that people with disabilities are “life without life”.
Yes, Charlie is perfect. All children are gifts regardless of challenges they may face. Everyone has something to offer this world. I believe individuals with extra challenges have more to offer than the most “accomplished” person. It is unfortunate that some people struggle to ’see’ the gifts, the good, the talents in those who have special needs.
I had no luck posting any comments here yesterday. Today it seems to be working just fine. It is good to be back and catching up on one of my favorite blogs.
Jim Blair’s “thought experiment” is nonsensical. If we could cook to order and know outcomes, we wouldn’t be having this conversation. And that’s exactly what makes it so important that we educate people about the realities of autism, because someday, the “cooking to order” part will be more of a reality. Autism’s not something to abort. It’s not something that’s the diametrical opposite of “success” or “Nobel-prize winning” (I’m guessing there’ve been a few of those who, ahem, well, you know). It just IS, and it IS OK. And there’s this little thing Reinhold Niebuhr penned that’s worth a million thought experiments and defines what it means to be a parent. It’s called the Serenity Prayer, and he nailed it. Not only do we accept the things we cannot change, there are quite of a few of us–autistic people included–who wouldn’t change it if they could.
Screw that stupid “thought experiment.” His choices of examples of “success” are ironic. I’d hazard a guess that the relative frequency of NT people who become All-Star shortstops for the Yankees is comparable to the frequency of autistic people who win Nobel prizes. Why does he not ask the same question of the parent of an “average” NT person whose child is highly unlikely to ever become an All-Star shortstop? Should that parent abort NT I in the hopes of having NT II later?
vernon smith, Nobel prize winner in economics has a diagnosed ASD
The only thing Mr. Blair’s thought experiment proves is that if Charlie was his son, Mr. Blair would choose Charlie II over Charlie I. (Too bad for him.) Brave new world indeed!
To ask any mother if she’d like to trade in her child is offensive. Why do people want to steal our sunshine? I respect other people’s opinions, even when I find them sad, but for Jim Blair to decide for you, Kristina, that you would have aborted Charlie I in favor of some hypothetical Charlie II (with a Nobel prize no less) is just, well, messed up (I am not using the actual words that come to mind).
LOVE your last paragraph, Emily. Well said.
I agree with the comments made by Kathy.
The glaring problem I would point out with this thought experiment is you can’t know the future, so why bother yourself with the suggested anti-life ethical failure.
Who can say who is to become a Nobel Laureate or Professional Athlete? Ninety plus percent of the population NEVER get there. Why bring up this fantasmagorical exercise in futility?
Great comments.
Having the question posed in that somewhat cold-blooded manner made me wonder if Jim himself has a child or whether he is just indulging himself in armchair ethics as a uninterested spectator.
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On the topic of the the site working out its kinks…
Is anyone else getting a completely black screen?
Not really complaining, (well maybe a little). I know the site has recently been moved to a new server and bugs are being worked out; just FYI.
Regan: Yeah, the background for the site is black for me as well. Makes things a bit difficult to read…
I have a black screen, too. I can only read the comments, not the post itself. I hope all these bugs are worked out soon. I am sure I am missing some great stuff.
Yep, it’s black. If you highlight it, you can read the text, which highlights as white.
“Of course not”. The amount of arrogance delivered in these three words is astounding…
If Mr Blair directed the question to me, answer would be, yes, of course I would choose hypothetical “Charlie I”. After all, using Mr Blair’s own logic, “Charlie I” IS, he exists as foetus at that very moment whereas “Charlie II” would be someone who merely might have been. So, that whole “thought experiment” pretty much implodes into itself…
I am not sure this sort of thinking is rare though, back in my salad Internet days in early 90s I read Usenet post by an MD who argued that the miscarriage risk associated with amniocentesis is not an issue. After all, the result of miscarriage is “only” lost pregnancy whereas not undergoing amniocentesis might result in disabled child. While I certainly had trouble wrapping my head around this reasoning what really got me is that it was presented as an absolute and only truth, something that is so self-obvious that there is no way anyone sane could have different opinion.
I feel sad for Jim. I remember what it’s like, to be so emotionally limited that you’d even ask a question like that. I’m now thankful every day for the way my child’s expanded my connection with what’s truly important in life. I hope Jim can eventually get to that place himself.
OT: Regarding the black screen—–major blog-wonkiness today. Wrote a couple of emails to the support desk—-thanks for persevering, white text and all.
Jim Blair’s comments were (I felt) presumptive though it’s true others have been even more so……
I think I would like a chance to replace Jim Blair I with whatever Jim Blair II you might have behind that curtain on the stage, Monty…
Not a bad suggestion…….
On the topic of the transfer–have the good folks at b5Media said anything about getting the sidebar to update?
It looked like they had it licked for a day or two.