WTF?

[conuly]

I can honestly state that I've never felt the temptation to compare autism to cancer. In fact, I've never felt the temptation to compare anything to cancer except, perhaps, cancer. Do I need to run through my list of why Autism Is Not Comprable To Cancer again? Because I will if I have to.

Comments

[queenmargot.livejournal.com]

Tumor vs. not a tumor? I'm not sure I see the comparison.

[conuly]

Apparently, autism is Just Like Cancer because it's devastating to families, but worse because (I'm not kidding, people have said this) autistic kids don't die.

[queenmargot.livejournal.com]

Oh, well, yes, that certainly is a shame.

Except... what?

I think I'd rather my child live to a ripe old age of, well, normal -- with a few problems that anyone with half a brain could get around -- than to suffer and die before hitting double digits. I'm just wacky like that.

[spitefairy.livejournal.com]

You'd think that list would be very small and obvious and would go something like this:
Cancer slowly destroys the body and you die, autism doesn't.

[ancarett]

As a mother of an autistic child, I suppose the closest I come to her sentiment is the frustration of trying to explain my daughter's condition to others. Autism gets a lot more "name recognition" these days than it did when she was first on the path to diagnosis seven years ago. I've lost count of the number of times people have told me "there's nothing really wrong with her -- she's just spoiled" or the like. People at work sometimes tell me that I should just park my kid with the teenager across the street when they want to arrange a late-afternoon meeting at no notice -- it's what they'd do and they can't understand my problem.

But I can't imagine ever thinking I should want to change out the diagnosis, especially to something so terrible as cancer or any other condition that brings pain, disability and even death. That's incomprehensible thinking!

[anotheralice.livejournal.com]

*seethe*

It's a difficult reality, knowing that your child will never be able to relate to you or anyone else in a normal way.

What, pray tell, is the "normal way" to relate to people?!

Children with cancer, however, can still relate to family members, can communicate, can still look them in the eye and say, "I love you."

Austistic. Children. Can. Communicate! They may communicate in ways in which us parents are forced to give off of our lazy butts and try to understand, but I've never seen an autistic child who doesn't try to communicate on *some* level, in *some* manner! What's the big deal about those stupid "I love you" words? People in our society fling them around without thinking, anyway. I was perfectly aware that my daughter was expressing her affection for me before she was preverbal whenever she'd share pieces of string with me. Is this really so difficult to understand?!

What would it be like to get the news that your child has autism?

Gee, I don't know -- maybe *some* parents are just grateful their kid is otherwise healthy and happy and *isn't* dying of cancer!!!

Yargh!!!

[anotheralice.livejournal.com]

uhh. before she was verbal, or when she was preverbal. Not, "before she was preverbal."

*embarrassed look*

[lakidaa.livejournal.com]

Maybe you would mail it to these newpapers that keep making autism out to the TEH END OF TEH WORLD!!!11omg when it's like other chronic diseases, in that you can get better with time and treatment.

boy I hope that was phrased right.

[l33tminion]

It's a comparison made out of ignorance, not malice. They assume that everyone wants to act neurotypical and that people who don't display typical "happy" social behaviors can't be happy. Besides, you're preaching to the choir. This story only went out today. Why don't you write a letter to the editor?

[chem-nerd.livejournal.com]

All right, someone fetch me a clue-by-four---I'm going on a smiting campaign...

[conuly]

I know. I did a report on ASL a while back, and along the way I did some quick research of cochlear implants. A lot of feel-good articles are written about them - and almost every one of them talks about how mom can finally get what she's always dreamed of, the chance to hear her kid say "I love you".

There are good things about those implants. There are bad things about those implants. If the choice was all about hearing those three words, it was the wrong choice, because then it reads like this: mom had a deaf kid, mom didn't want to get off her butt and learn any form of non-verbal communication, mom subjected her kid to an unnecessary surgery which 1. probably destroyed any hearing kid had, 2. is associated with all the normal risks of surgery, 3. is also associated with, among other things, meningitis, and 4. doesn't even work for everyone just so that she could hear the words "I love you" (which is more important than simply knowing that her child loves her, or seeing him sign it (or whatever).

[conuly]

And get told that I'm not really autistic, or that I don't really understand what it's like to be a parent of an autistic kid? Thanks, but no. I'm in a bad enough mood lately as it is.

[l33tminion]

You seem to be defeating yourself before the fact.

[conuly]

YOU write this letter to the editor. If you don't get either type of negative response (AND you get published!), I'll concede the point. Until then, I'm in a truly rotten mood, and I'm not making it worse.

[beetlebomb.livejournal.com]

Ow, my brain hurts...

[codeman38.livejournal.com]

I really need to design some sort of "Autism != Cancer" icon...

[codeman38.livejournal.com]

Austistic. Children. Can. Communicate! They may communicate in ways in which us parents are forced to give off of our lazy butts and try to understand, but I've never seen an autistic child who doesn't try to communicate on *some* level, in *some* manner! What's the big deal about those stupid "I love you" words?

AMEN. Why do people not get that? Communication is not necessarily verbal... nor oral, for that matter. (And I make the distinction because some parents don't even seem to be content that a kid can TYPE!)

And I don't get the whole deal about the kids saying "I love you" either... if I *were* to insist that a child communicate verbally, that's about the LAST thing I'd be worried about him saying. -_-

[anotheralice.livejournal.com]

if I *were* to insist that a child communicate verbally, that's about the LAST thing I'd be worried about him saying. -_-

Seriously. I'm *much* more concerned that my daughter can communicate effectively when/where/why she's hurt/suffering/unhappy so that I can *help* her rather than worrying about her giving me some weird ego-boost.

[anotheralice.livejournal.com]

And see, it *especially* doesn't make sense in the context of ASL. If a kid can learn a language -- *any* language, be it signing, or typing -- that's *without a doubt* a very clear form of communication. Why hearing it would be *any* different from seeing it signed or seeing it typed on a screen is absolutely baffling to me.

Yipes.

[deathweasel.livejournal.com]

Design a bumpersticker and sell it on cafepress. I'd buy it.

[wakasplat.livejournal.com]

"AMEN. Why do people not get that? Communication is not necessarily verbal... nor oral, for that matter. (And I make the distinction because some parents don't even seem to be content that a kid can TYPE!)"

What I've seen is often an interesting distinction made:

1. If their own kid can type, but not speak, then it shows the "tragedy of autism".

2. If I can type, but not speak, then I'm lucky and in no way comparable to people who suffer the "tragedy of autism".

<boggle>

[wakasplat.livejournal.com]

Just a note: Sign languages are, being languages, not exactly non-verbal communication.

But at any rate, yeah. Even I know three different ways to say "I love you" in sign languages (the ILY sign, plus SEE and ASL) and I'm not even remotely close to fluent in any sign language at all, and I'm crappy at languages.

My cat expresses love in cat ways. If she said "I love you" in English, I would be seriously worried. My friend's parrot may be able to say "I love you" (which he does, and combines it with enough other words in novel ways that it's clear he knows something of the meaning), but I wouldn't expect a cat to and would be rather unnerved by one if one did.

Plus, I didn't adopt her so that she would love me. I hoped she would, but I didn't force the issue because forcing that kind of thing seems cruel. I treated her like I loved her, and she eventually began showing me in various ways that she loved me. Saying so out loud would be redundant.

[conuly]

Verbal here means, I think, literally "with the voice". Sign languages would be manual, I suppose.

[wakasplat.livejournal.com]

Have you ever read Medical Research Funding (http://web.syr.edu/~jisincla/research.htm) by Jim Sinclair?

An excerpt:

Cystic fibrosis, cancer, Huntington's disease, and muscular dystrophy are diseases! They make people sick. They cause incredible amounts of suffering and misery, and they kill people. Of course NIH ought to fund research into these conditions!

Autism is not a disease. It does not make people sick, and it does not kill people. There are different opinions about how much suffering and misery autism causes. Some people do suffer a lot from it, while for others the suffering is caused primarily by other people, not by autism. But even at its most devastating, the people most directly affected by autism--those who are autistic--tend to report a great deal less suffering as a result of their condition than people with cystic fibrosis report as a result of theirs. Maybe cystic fibrosis research receives more funding than autism research because CYSTIC FIBROSIS IS A DEADLY DISEASE THAT MAKES PEOPLE SICK AND MISERABLE, AND THEN KILLS THEM!

[l33tminion]

Fine. Working on it.