WEDNESDAY, MAY 24, 2006
“If we believe absurdities, we shall commit atrocities.”

which is a misquote of Voltaire
“Those who can make you believe absurdities can make you commit atrocities.”

Hmmm

I Corinthians 1:23
but we preach Christ crucified: a stumbling block to Jews and foolishness to Gentiles.

mayfly, you are misrepresenting people by saying this. I’d like to ask you to source the statement.

Very eloquently written. Nicely done.

- pD

People are seeking to replace their children? By doing what? If you mean by seeking a cure, nearly all are motivated by trying to help their children. They are worried about their children’s future. They often fall victim to doctor’s assuring them that science has not caught up with the avant garde therapies on offer. In a great many of these partnerships, the doctor truly believes in what he is doing. It’s a combination which always leads to money wasted on treatments which in no way help the child, and far too often treatments which put the child at unnecessary risk.

Such parent’s do not see their children as lost causes. They aren’t doing nothing, they are doing too much. They firmly believe they are doing good.

These same people also pursue more traditional therapies such as OT, speech, ABA etc to help their children. It is not an either/or thing.

They believe their child would be better off without autism. Some may even think an autistic’s life is not worth living, but very few believe their own children’s lives are not worth living. They seek a better life for their children through elimination of the disorder.

There are exceptions which end in the discovery of murder/suicide. These are rare events.

There are also those, again miniscule in number, who kill their autistic children. Katie McCarron’s mother did not kill her because she thought her child’s life was not worth living, she killed her because she was too selfish to love a child with autism. There are a few people one can label as evil. Karen McCarron’s mother is one.

After Katie’s death many people wrote about how that event proved all those who seek a cure as evil.

My daughter would be better off without her autism. However her worth and my love for her are in no way lessened by her disability. For many this is a concept so foreign to them they cannot believe it even exists. Makes me wonder if such people can only love the perfect.

“And in looking for a culprit like vaccines, these people are essentially seeking vengeance and no more.” Vengeance against whom? I personally believe if pharmaceuticals and the USG did not have such deep pockets, the vaccine hypothesis would have bee tossed in the rubbage can long ago. But I want to understand what you mean by vegeance.

Especially in the following

“But if we look at it as an essential negative without showing the complexities of the situation, we’re effectively playing into a mindset which cries for vengeance or is essentially in a stage of mourning.”
——————————–
There are studies which look at average monetary costs of autism to parents and society. Certainly there are outliers the use of which either overstates or minimizes such costs. if Kristina’s post was on a study which multiplied the maximum cost against the entire autistic population, then I have indeed misrepresented your views. But do keep in mind high-functioning autistics often need more help than one might expect given their abilities.

“Now, maybe you’re right. Maybe we should essentially lie about the situation, pretend to be the ultimate victims, and even take the agency and autonomy away from autistic individuals.”

Whoah, where did that come from. If you are not dysfunctional, then you should not represent yourself as being so. If a person is dysfunctional they should not be represented as being so. I cannot even fathom where I talked about taking away agency and autonomy from autistics.

The problem lies in developing a policy which deals with the wonderfully capable and those who will be completely dependent on society’s kindness. I’m more interested in the latter, I believe you are more interested in the former.

“take the agency and autonomy away from autistic individuals.”

If my daughter does not improve on her 18th birthday, my wife and I will need to file a petition to declare her incompetent. That prospect saddens me because I feel I will be taking away her agency and autonomy. Your statement shows a lack of understanding of raising low-functioning child. Their may also the task of setting up a conservatorship for her.

The needs of the low-functioning are not complicated by a large skillset. Certainly no one is completely devoid of skills nor incapable of learning new ones. I don’t think I argued that such skills should not be developed. I argued that one should not overstate a child’s capability.

Low-functioning children improve at a rate much slower than their high-functioning cohorts. “lost forever no”, but dependent on the kindness of society for much of their life yes.

But I am worried that you are right and society is not capable of such altruism.

That changes things a lot.

No, no, no. Not really at all. They’re looking to replace their children, generally speaking. Helping them with their behaviors is irrelevant when the person isn’t there. Quite honestly, I haven’t found one person in such a mindset who isn’t in mourning, and once you’re there you’re looking essentially in vain for something that isn’t. And in looking for a culprit like vaccines, these people are essentially seeking vengeance and no more.

And you’re putting words in my mouth. I have hardly said “autism is always positive!” (asides from the fact that, technically speaking, that’s not a mantra I’ve heard, nor for that matter, unless there is a whole other religious cult I have yet to hear of, is that qualification for a mantra. The technical side of me is annoyed by such things.) And I’ve never said, ever, that services shouldn’t be provided. I’ve argued quite extensively that not doing so would actually be essentially denying a human being the right to a basic, appropriate education, which is actually some pretty strong language in context. But if we look at it as an essential negative without showing the complexities of the situation, we’re effectively playing into a mindset which cries for vengeance or is essentially in a stage of mourning. That’s certainly not going to help the individual. Looking at the complexities, seeing the good and helping improve the not-so-good, is a way to real make change for inclusion into a societal context. That’s the way that any such improvement is conducted, and for it to be considered otherwise is highly prejudicial (though I hate to say that; it’s such a loaded term, and yet the truth is hard to ignore).

Now, maybe you’re right. Maybe we should essentially lie about the situation, pretend to be the ultimate victims, and even take the agency and autonomy away from autistic individuals. Nothing says this better than the situation we’re in now. It’s not easy to simply say this is better, as this still represents autism’s situation as a essentially a bitter lot of individuals with essentially dead children looking for vengeance again, but it might get more than the real representation of autistic people. I don’t think so; I think that if we look and say that there are really some good things here and that there is real, tangible room for improvement and that this isn’t a lost cause in any way, people will actually pay attention and act. In private discussions I’ve had with others not familiar to autism, a question like “aren’t severely autistic individuals lost forever?” comes up consistently. Not just occasionally, consistently. It stems from such a mindset of “it’s so much cost we’ll never pay for it, and there’s really no expectation of improvement”. It’s a mindset that dominates current “autism advocacy”, and at this point I think it’s actually holding any such funding down, major time. That’s the one thing I was so clear about in my testimony the first time that I did right, and it was really the reason people of all stripes went out of their way to help us. Quite honestly, people with money to help will not throw their money at lost causes, and right now I’m seeing a presentation of a lost cause.

Cliff

For many to say my daughter’s problems stem from her autism is offensive.

But such people always stipulated they were supportive of services.

But now it has been declared offensive to mention the requirement for those services.

I seek help for my child due to her disorder. However, when I relate to her in life, I just see a child of whom I am very proud.