Now what did I tell you?

[conuly]

I'm going to copy and paste this.

I would like to thank Katie Scarvey for her compassionate and informative articles that heighten autism awareness.

Here it comes....

My husband and I have two sons on the autism spectrum. We understand Mrs. Scarvey's comparison of children with autism and children with a cancer diagnosis.

Really? Because I sure don't.

Both are devastating diagnoses for a parent to hear.

To some people, so is the realization that their child is gay. That doesn't make such a comparison correct, or kind.

The Scarvey family has very publicly discussed their own daughter's diagnosis with cancer and are bravely battling the painful and arduous road to cancer recovery. Because of this, I do not feel that she was belittling any parent who has a child with cancer and their painful ordeal.

No, but possibly, just possibly, she was insulting an entire group of autistic people? Maybe, just maybe, she was being insensitive to those who really don't think that autism is akin to a fatal disease?

When my husband and I received the autism diagnosis of our more severely autistic son, we felt as if the child that we had prayed and dreamed of, and for, had died.

That child never existed. My parents never got a kid who wanted to play soccer. Life goes on. For most of us, anyway. Some people literally kill their children. I assume you're not one of those.

The plans that we had made for his future (college and family), now have to be redirected for his special education needs, various therapies and long term care after we have passed.

Which you do because you love him. And because he isn't dying. And because he's going to live for quite a long time.

I personally feel autism is akin to a terminal illness.

I personally feel the same way about stupidity. It is only cured by death, after all. But I don't go around telling people that. I think it's rude.

Doctors offer parents a plethora of options to help deal with some of the "many" symptoms and physical and mental manifestations of autism, but no one can offer a regimen of chemotherapy, radiation or surgery to cure our son.

Your son isn't sick. He's no more sick than the aforementioned gay kid, or all the lefties in the world.

His life will "forever" be a battle of his illness.

And all my life, I've had to accomodate to live in this world of righties. Oh, the horror. People no longer force kids to change handedness. This is supposed to be a good thing.

We and other autistic parents wonder, "Do our children know and understand how much we love and fight for them everyday?"

You're not autistic. Or, at least, you don't define yourself that way, which is what really matters.

Most parents of children with cancer do not have to ask that question.

No. They have to ask "does my child understand that he is dying" and "how do I explain to their brothers and sisters that they're gone?" Really, you got the better deal here.

Their children can "show" and "tell" them, "I love you."

So can your son, if you would take the time to listen and learn.

I hope that our son knows that we love him and will fight for him everyday for their rest of our lives. I have to believe that in some way he knows.

Because he's not just going to conveniently up and die so that you don't have to wonder anymore.

And this, ladies and gentlemen, is why I don't point out how offensive people are anymore. Actually, I never did, but that's because I'm a born cynic.

Anyway, l33tminion, want to try again? Maybe this time you can make it clearer (how, I'm not sure) that you thought the comparison was insulting to autistics, not to people with cancer (though I'm confident that it's not a fair comparision to them either).

Comments

[kibbles.livejournal.com]

You know, kids are remarkably self centered. Sometimes I wonder if my kids really know how much I love them and the sacrifices we make and what we do for them. I mean they are loved and know it, but they make it sound like they want their kid to say, hey, mom, thanks for busting your ass to get me a decent education.

Well I dont expect my kids to say it, no matter what their situation. It's just not a kid thing.

That is a woman with a martyr complex if ever I heard one.

The fear of losing a child terrifies me. If my child ever had a terminal illness, I don't know what I would do. I have tears in my eyes even thinking about it.

If my child were autistic, I don't know what I'd do, but at least they'd be alive.

I'll be honest, with K being gifted I was always worried (even before her) what would happen even if I had a 'normal' kid, or worse, one that had difficulties with school or whatever...and I do. We don't know what or to what extent, but it may be the case with my middle son (and my youngest doesnt talk much but I'm not concerned yet). And you know what? He's loving and sweet and fun and wonderful and it doesnt matter. He's my precious darling angel boy, and that's what matters. And if they tell me he has problems with anything at all, as long as he can live a long and healthy life, it's ok. I wasn't devistated with the news that he has motor skill problems, or talking, or whatever. I'm ok.

But if his doctor told me tomorrow that he had cancer I'd want to die, myself.

Ug, better end this because I'm rambling and upsetting myself.

That mother should be thankful for every moment of the day that she has her sons alive.

[conuly]

The comparisons get worse and worse. I've even read some people saying that autism is worse than cancer because kids with cancer die. *shudders*

[wakasplat.livejournal.com]

Maybe this time you can make it clearer (how, I'm not sure) that you thought the comparison was insulting to autistics, not to people with cancer (though I'm confident that it's not a fair comparision to them either).

My staff person survived a fairly severe form of cancer. (So severe that her gigantic tumor is now on display somewhere.) She finds it just as insulting as a cancer survivor as I do as an autistic. Just for reference. Neither of us would have ever remotely thought of comparing the two.

[conuly]

I figured as much. Well, not about your staff person (hugs to her, by the way, or cookies if she would prefer), but about cancer survivors in general.

[wakasplat.livejournal.com]

What amazes me about the stuff this woman is saying... does she realize that chemotherapy doesn't cure everyone, that even if cancer goes into remission with treatment it can reoccur later at any time, and that the aftereffects of cancer treatment can be lifelong and highly unpleasant (e.g. chronic pain) as well as predisposing to other conditions? (Some of that lifelong aftereffects stuff wasn't well-known until recently because doctors were refusing to listen to people who'd had cancer in childhood and been cured. It appears the medical profession wanted to believe their job was over once the cancer was gone and that their work didn't harm anyone.)

So she'd rather live with the possibility that her child will die young, that at any time her child might re-acquire a truly horrible disease and undergo treatment that feels worse than the disease at times but may save his life, that her child may be in physical pain his entire life and be prone to any number of other unpleasant conditions as a result of the treatment... than live with a child who has a neurological configuration that is generally stable and doesn't kill people?

I've got to refer back to this again or I'll be rambling forever:

http://web.syr.edu/~jisincla/research.htm

[conuly]

Apparently, she'd rather live with the knowledge that even complete strangers know she doesn't love her child as much as she would if her were normal.

[wakasplat.livejournal.com]

I just watched a documentary with the aforementioned staff person in which a mother of a son with an intellectual disability (who first said that "everybody loves her son," then said that "nobody could love him more than his family does" — and who overprotected him throughout the film to a point that was truly appalling, extending to doing things for him that he was way way way way way more than capable of doing himself) said that she would rather "take her son with her" than "leave" (as in when she dies) her son to the possible graciousness of strangers.

I asked my staff, "Did she just confess a possible intent to murder her son on national television without anyone saying anything?"

She said, "Yep, that's exactly what I thought."

[l33tminion]

Now that is unfair. Yes, the mother is being emotional, unreasonable, insulting, and even stupid, but there is no need to accuse her of loving her child any less. That's a low blow.

I'll admit that equating the death of a dream to the death of a child (something done in both the original article and her response) is undoubtedly selfish and cruel. Unfortunately, love doesn't preclude selfish, cruel actions in what is undoubtedly an emotionally trying situation. Not that that is any excuse.

*sighs* I don't know whether this letter was in response to my letter or just to the original article, but given the timing, I assume that it was in response to both. In general, newspapers will publish one reflection on an article per person, as they aren't a forum for ongoing debate of that sort. As a result, I will not respond to this letter, although I will continue to respond to people who use similar metaphors in the future.

On the other hand, just because there was the inevitable response from the "autistic parent" (sic), too blinded by their own pain to properly consider the ramifications of what they say, does not mean that my letter accomplished nothing. Most likely, it was read by the same people who read this letter and the original article. At least I've allowed some thought or debate on the issue by bringing up the opposing point of view.

[conuly]

Now that is unfair. Yes, the mother is being emotional, unreasonable, insulting, and even stupid, but there is no need to accuse her of loving her child any less. That's a low blow.

Maybe, but it seems fair to me. She would rather not have an autistic child. She would do anything in her power to make her child not autistic - including trading the autism for cancer. Her child would be somebody else if not for the autism. When she found out about the autism, it was like her child died, and left her with the inferior replacement.

[chem-nerd.livejournal.com]

Another one of these? Someone fetch me a clue-by-four, that I may smite...

[l33tminion]

"She would rather not have an autistic child. She would do anything in her power to make her child not autistic"

Granted. This person is a curebie. However, she genuinely thinks that a "cure" would be in her child's best interests. Which it probably would be, but for the crucial fact that "curing" the autism would turn the child into "somebody else". However, as a curebie, this person probably takes the theory that autism is a "disease" and therefore is not part of her child's "true self" or something like that. That's almost certainly wishful thinking, but she's probably not aware of that. I will point out that in the case of mental differences and mind-affecting drugs it's very hard to say what is "really" the self and what is not.

"- including trading the autism for cancer."

Saying that Autism is "akin to a terminal illness" (italics mine) is not the same as saying that she would be willing to trade autism for cancer. The words this person actually said are bad enough, but there's no need for you to put more damning ones in her mouth.

"Her child would be somebody else if not for the autism."

I agree, but she genuinely doesn't believe this.

"When she found out about the autism, it was like her child died, and left her with the inferior replacement."

She doesn't say "inferior", although it can be she thinks that her son will have a lower quality of life than someone without Autism. That doesn't mean she loves her son less.

Show some compassion, Conuly. This isn't a case of murderous, monster parents who no longer love their "diseased" child. This is a case of loving people who do cruel, selfish, and irrational things in a painful and difficult situation.

[l33tminion]

*pulls a clue-by-four out of the bag-o'-l33t, tosses*

*sighs* Have at.

[l33tminion]

That's horrible. However, I feel I must note that the silent "anyone" includes you.

[conuly]

When you resort to phrases like 'Most parents of children with cancer do not have to ask that question. Their children can "show" and "tell" them, "I love you."' and 'When my husband and I received the autism diagnosis of our more severely autistic son, we felt as if the child that we had prayed and dreamed of, and for, had died.', you lose my compassion and sympathy. End of story.

[chem-nerd.livejournal.com]

*smites mightily* Thanks, that was necessary. *returns clue-by-four*

[l33tminion]

I'm sorry you feel that way. I'm a bit upset, actually. Remember that you, yourself, are criticizing someone for not showing compassion.

[conuly]

I'm a hypocrite. It is possible that I'll alter my view in a day or so, when I'm feeling better. However, right now, I stand by my statement.

I'd talk more, but I don't want to piss you off.

[l33tminion]

All right. I'm not angry. Just a bit irritated.

I hope I didn't hurt your feelings. I can be a bit blunt with my criticism (to put it mildly)...

[conuly]

I have the exact same problem. I worry about it, really.

[wakasplat.livejournal.com]

That would only make sense if you had access to enough information to prove your guesses about my activities true (which they're not — I'm one of the least silent people on this kind of matter that I've ever met, online or offline; whether I can come up with all the actions necessary to say something to the right people within nine hours of viewing a taped show is another matter). Which you don't. So I don't know why you're saying this.

The point that I was trying to make, though, is that neither anyone involved in the making of the documentary nor anyone at the show it was aired on commented publicly on this statement while it was being aired.

[leora.livejournal.com]

When I was a child my mental definition of "love" was, love is the word you use with family, much like the word "like" which is the word you use with friends.

I want to be very clear on this - my parents mean a great deal to me. They definitely love me, have done a great deal for me, and were anything to happen to them, it would hurt me very much.

That said, I used to feel very guilty and worried as a child because I didn't love my parents. I had this feeling that parents took care of kids because of a bond of love, and since I didn't have one, I was worried that somehow I was cheating them. I didn't tell them that, of course. I didn't really bond with people until I was about 14. I had some close friends, but I am not sure I loved anyone until at least age 15.

I'm not autistic or aspie. I'm just weird. My point is - you don't have children because they will love you. You have children because you love them. Part of what made me accept many things and okay with things was thinking about having my own children, and I figured it out. You get no guarantees, but you have children because you are willing to give and give and hope it helps a person grow and have a good life. You take that gamble or you choose not to have kids.

I also worry about having a child of average or below intelligence, though. I admit that. I feel bad about it, but it's not so much because it'd be a "bad child" as I'm not sure I'd be a good parent for the child. I want very much to be a good parent to any child I have. And I worry I will push too hard or I'll overcompensate and not push enough. I won't know what standards to hold the child too or how best to help. But if I had a child with to me low intelligence, I would just do my best.

At this point, given my disabilities and financial problems, I'll probably consider myself lucky if I can get to a point where I can have any child before I am too old to raise one. I don't know why having children means so much to me, but it does. And if it doesn't mean that much to someone, then maybe they shouldn't have them. It's a choice, and it's definitely not right for everyone. But if you make that choice, do your best for your child and try to love the kid, even if it isn't everything you hoped for. No kid ever is. Although some kids may be good things people didn't think to hope for.

[leora.livejournal.com]

*blinks*

Oh I bet that'd go over well to a parent of a child with cancer.

"You're lucky, your kid will die."

I think I shall pass on saying that.

[scarletdemon.livejournal.com]

When my husband and I received the autism diagnosis of our more severely autistic son, we felt as if the child that we had prayed and dreamed of, and for, had died.

oh god, what a fucking evil bitch.

[conuly]

It's not even the worst I've read.

[ex-chaos-by-699.livejournal.com]

Man, this comment makes me feel a lot better about certain things. I was never sure if I loved my parents when I was a kid. I'm pretty sure I don't now, but I have my reasons (and that's all I really want to say about that).