Autism Speaks and brain donations

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Tambourine-Man
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29 Oct 2011, 10:37 am

Gedrene wrote:

Tambourine-Man wrote:

My goodness, first they want to speak for us, now they want our brains! Those nazis! Joking again...

Did you suggest that I called autism speaks Nazis? I defended you when another guy said that. It's obvious that it's a joke, but it just goes to show how stab in the back you are.

Tambourine-man wrote:

You guys, this isn't s black and white issue... It's grey... matter.

Here we try to discuss things rather than make unlearned, suggestive, ignorant comments on the sidelines.

[quite="Tambourine-man"]Ok, I'll stop.

C'mon man, please lighten up. You are not the only person on this forum. Not everything I say is a veiled reference to you.

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You may know me from my column here on WrongPlanet. I'm also writing a book for AAPC. Visit my Facebook page for links to articles I've written for Autism Speaks and other websites.
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Last edited by Tambourine-Man on 29 Oct 2011, 5:42 pm, edited 1 time in total.

Gedrene
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29 Oct 2011, 12:51 pm

Tambourine-Man wrote:

C'mon man, please lighten up.

You just made a joke about me comparing people to Nazis.

Tambourine-Man wrote:

You are not the only person on this forum. Not everything I say is a veiled reference to you.

Black-and-white thinking Tambourine-Man? I don't say that all you say is a veiled reference about me. I just say it is when it is. It's your fault that it's distressingly common.

Tambourine-Man
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29 Oct 2011, 5:43 pm

Gedrene wrote:

Tambourine-Man wrote:

C'mon man, please lighten up.

You just made a joke about me comparing people to Nazis.

Tambourine-Man wrote:

You are not the only person on this forum. Not everything I say is a veiled reference to you.

Black-and-white thinking Tambourine-Man? I don't say that all you say is a veiled reference about me. I just say it is when it is. It's your fault that it's distressingly common.

I didn't make a joke about YOU. Don't be paranoid. Lots of people on her compare AS to nazis. That comment was not directed at you.

Gedrene
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29 Oct 2011, 6:21 pm

Tambourine-man wrote:

That comment was not directed at you

There is a saying on the internet that goes I think something like this: Oh really?

Tambourine-man wrote:

I knew there was something fishy about the name "Hacking Autism."

Gedrene wrote:

This isn't consistent. I really did think autism speaks has changed its tack.

Gedrene wrote:

aghogday wrote:

Hacking Autism is an Idiom.

Whether it's an idiom isn't the problem. What matters is whether it has bad connotations and lau makes the good point that it does.

http://www.wrongplanet.net/posts178479-start30.html <-- Both quotes from posts here or next page I believe.

Tambourine-man wrote:

My goodness, first they want to speak for us, now they want our brains! Those nazis! Joking again...

Gedrene wrote:

Donate your child's brain to autism speaks!

Not directed at all! And the atacama is a rainforest.

Last edited by Gedrene on 30 Oct 2011, 5:48 am, edited 2 times in total.

Tambourine-Man
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29 Oct 2011, 7:01 pm

Gedrene wrote:

Tambourine-man]That comment was not directed at you[/quote]
There is a saying on the internet that goes I think something like this: Oh really?

[quote="Tambourine-man wrote:

I knew there was something fishy about the name "Hacking Autism."

Gedrene wrote:

This isn't consistent. I really did think autism speaks has changed its tack.

Gedrene wrote:

aghogday wrote:

Hacking Autism is an Idiom.

Whether it's an idiom isn't the problem. What matters is whether it has bad connotations and lau makes the good point that it does.

http://www.wrongplanet.net/posts178479-start30.html <-- Both quotes from posts here or next page I believe.

Tambourine-man wrote:

My goodness, first they want to speak for us, now they want our brains! Those nazis! Joking again...

quote="Gedrene"]
Donate your child's brain to autism speaks!

Not directed at all! And the atacama is a rainforest.[/quote]

I can direct it at you if you want me to. I intended it to be a more general statement.

Inventor
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29 Oct 2011, 7:56 pm

First it is The Pods took your real child, now The Night of the Living Dead.

Seeing what happened to Tamborine Man, reminds me of The Blob.

I did look into this program several years ago. Children are a problem, one, they are too healthy and protected, and two, parents are attached to them.

This combines to produce a child size organ shortage. Other children could live if they could find spare parts.

Many adults have no interest in being buried, or use for their body, after being dead of course. There is still a parts shortage.

Research materials are harder to come by. It will not directly save a life, and the knowledge gained may not have any use.

Then there is the organ market, child organs being high value, so asking for brains to study autism can gain the whole body for organ donation. It is a business, there are few ways to advertise.

This is not the CDC, it is private, for profit, and even non profit just lacks stock holders, funds are spent on staff.

Self employment aspects aside, it is the only way to get organs, and those that need them do not ask a lot of questions.

Public Health, better medical care, car seats, have reduced the child death rate for all causes, That is the place to study brain development. Autistics are rare, making it even harder.

It is still the most emotional time for a parent.

The time to think is long before the event, rare as it might be, if I lost my child, would I save other lives?

Nexus
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29 Oct 2011, 9:23 pm

But what gets me is that, wouldn't you need a significant child mortality rate for such brain donations to be viable? How would they get a sufficient sampling size within their lifetime?

Also as I mentioned what about 'questionable' circumstances of death, would the brain still be used if it's found out the parents killed them?

Can the child opt-out if they're aware of the project and want no part of it?

There's good reason why it's a taboo, loads of ethical questions are naturally raised.

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Marcia
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29 Oct 2011, 10:14 pm

Inventor wrote:

It is still the most emotional time for a parent.

The time to think is long before the event, rare as it might be, if I lost my child, would I save other lives?

I think this campaign makes sense, for exactly the reasons I have quoted.

I would think that most of us are familiar with organ donation schemes in our respective countries. I have been a registered organ donor since my late teens, and more recently completed an online form giving consent for any of my organs to be used for transplant or research purposes after my death.

Death is inevitable, but the death of a child is particularly distressing and traumatic, even if it was expected (illness or serious injury). The sudden death of a child can be devastating.

Parents are much more likely to consent to organ donation if they are already aware of the potential uses and benefits which would arise from such donation. Donation for research is presumably less common because it is not immediately life-saving and any benefits are much longer term and less obvious.

In Scotland, as far as I'm aware, a child can give or withhold consent from the age of 12 years.

Gedrene
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30 Oct 2011, 5:52 am

Tambourine-man wrote:

I can direct it at you if you want me to. I intended it to be a more general statement

It was still intended for me if not only me. It's still you saying that I and others called autism speaks Nazis on a pretentious basis. It was a joke at my expense still if not only mine. Also, are you threatening me?

Just to make sure nobody tries to be slippery:

Tambourine-man wrote:

My goodness, first they want to speak for us, now they want our brains! Those nazis! Joking again...

Gedrene wrote:

Donate your child's brain to autism speaks!

Tambourine-Man
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30 Oct 2011, 11:11 am

Gedrene wrote:

Tambourine-man wrote:

I can direct it at you if you want me to. I intended it to be a more general statement

Tambourine-man wrote:

My goodness, first they want to speak for us, now they want our brains! Those nazis! Joking again...

Gedrene wrote:

Donate your child's brain to autism speaks!

Alright, if you insist on feeling personally attacked, I won't stand in your way.

Gedrene
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30 Oct 2011, 11:26 am

Tambourine-Man wrote:

Gedrene wrote:

Tambourine-man wrote:

I can direct it at you if you want me to. I intended it to be a more general statement

Tambourine-man wrote:

My goodness, first they want to speak for us, now they want our brains! Those nazis! Joking again...

Gedrene wrote:

Donate your child's brain to autism speaks!

Alright, if you insist on feeling personally attacked, I won't stand in your way.[/quote
There is no 'I feel' or 'I believe'. Face it. You said I called Autism Speaks Nazis for a joke. That's disgusting. The last time someone said that to me on here it was apparently a Joke. It was still tasteless and self-serving.

Gedrene
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30 Oct 2011, 11:28 am

Nexus wrote:

But what gets me is that, wouldn't you need a significant child mortality rate for such brain donations to be viable? How would they get a sufficient sampling size within their lifetime?

Also as I mentioned what about 'questionable' circumstances of death, would the brain still be used if it's found out the parents killed them?

Can the child opt-out if they're aware of the project and want no part of it?

There's good reason why it's a taboo, loads of ethical questions are naturally raised.

These are all good reasons, which if Tambourine-man actually used his direct communication with autism speaks rather than cattily saying that we called autism speaks Nazis we might be able to shine some light on the situation.

Gedrene
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30 Oct 2011, 11:35 am

Marcia wrote:

Inventor wrote:

It is still the most emotional time for a parent.

The time to think is long before the event, rare as it might be, if I lost my child, would I save other lives?

Thanks for your contributions to the discussion Marcia and Inventor. They are taken gracefully and do of course highlight the main fact that organ donation is helpful for other people. It's a fact that must not be avoided.

It is good that you don't just get defensive whilst putting on an uncaring veneer. These are important considerations. My issue is how is this all being conducted, however. If only we had reliable sources.

aghogday
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30 Oct 2011, 3:01 pm

Not sure if anyone clicked the link to the actual Autism Tissue program but here is an overview of the actual the process:

http://www.autismtissueprogram.org/site/c.nlKUL7MQIsG/b.5574313/k.E244/Overview.htm

Quote:

Overview
The Autism Tissue Program (ATP) is the largest program solely dedicated to increasing and enhancing the availability of post-mortem brain tissue, to as many qualified scientists as possible, in order to advance autism research and unravel the mysteries of this devastating disorder.

To accomplish this mission, the ATP works with tissue banks, organ and tissue procurement agencies, medical examiners and the general public, to promote and procure tissue donations to the program.

The ATP is not a clinical organ procurement agency, but rather we facilitate the wishes of donors and families to donate their tissue to autism research. Through the ATP’s established international infrastructure, we work with any accredited tissue bank, organ procurement agency, or medical examiner that receives a family’s request to donate their loved one’s tissue to the program.

Once contacted, the ATP will insure that the family’s request to donate their loved one’s tissue is faithfully met, covering all costs to the family and partnering agency as well as ensuring the tissues' proper and rapid transport to the ATP’s repository at the Harvard Brain Tissue Resource Center (HBTRC) in Boston, Massachusetts.

It is through the generosity and foresight of donors and families as well as the efforts of these partner clinical organizations that each donation is made possible.

If you are an accredited tissue bank, organ and tissue procurement agency, or medical examiner and would like to learn more about the ATP or to become a partner in this program’s mission, please email us at info@autismtissueprogram.org or speak with us directly at 1-877-333-0999

.

The process works the same general way as it does with anyone that wants to be an organ donor. Unaffliated accredited tissue banks, organ and tissue procurement agencies, and medical examiners do the actual work of procuring the organ. After that is done, the family is assured through the process, that the organ will be used for autism research.

No need to fear anything about this anymore than there would be if someone was donating their heart to the American heart association. In that case, the same accredited professionals would be the ones to procure the heart, and then transfer it to appropriate research facilities associated with the American heart association.

Regarding if the child was murdered. Technically, the organs would be used regardless of the cause of death, as long as the organs were viable, and the legal documents that authorized it were still in place. Same way it would work with any other organ donation.

Whether or not the guardian and the child have the same view on it is between the guardian and the minor, as it would be with any other medical procedure, but the parent/guardian has the legal authority to make the decision, not the minor, again same as with any other organ donation or other medical procedure.

My information is based on US laws, not sure how it would work in any other country.

aghogday
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30 Oct 2011, 3:30 pm

Gedrene wrote:

Tambourine-Man wrote:

Gedrene wrote:

Tambourine-man wrote:

I can direct it at you if you want me to. I intended it to be a more general statement

Tambourine-man wrote:

My goodness, first they want to speak for us, now they want our brains! Those nazis! Joking again...

Gedrene wrote:

Donate your child's brain to autism speaks!

You aren't every autistic person. People have called Autism Speaks NAZI's on this internet site on a number of occasions. That doesn't mean you have done it; as far as I know you never have, so there is no evidence that this comment could be associated with you as an individual in anyway.

If you haven't said it, I don't understand why you would think it has anything to do with you. There is certainly no objective evidence that it is specifically directed at you. The record proves it.

You made the initial statement that the article didn't say whether or not the children would be dead or alive; pretty sure you weren't completely serious when you made that comment. If taken seriously it would be a highly offensive comment toward the spirit of the program.

Tambourineman acknowledged his comment was a joke, and then there was the sarcasm about the Zombie Apocalypse, that was obviously not to be taken seriously, but never the less it was a humorous statement.

It is evident that it is a subject that is likely going to generate sarcasm, jokes, and comments that obviously are not being made as serious ones or directed at any particular individual.

Objectively speaking, Tambourine man's comments were pretty witty beyond the obvious one about autism speaks, breaks the tension of a serious subject like organ donations, Morbid humor yes, but that is what morbid humor is designed for, to take the edge off of reality.

Gedrene
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30 Oct 2011, 3:55 pm

Gedrene wrote:

Tambourine-man wrote:

Gedrene wrote:

I can direct it at you if you want me to. I intended it to be a more general statement

Tambourine-man wrote:

My goodness, first they want to speak for us, now they want our brains! Those nazis! Joking again...

Gedrene]
Donate your child's brain to autism speaks![/quote]
Alright, if you insist on feeling personally attacked, I won't stand in your way.[/quote]
There is no 'I feel' or 'I believe'. Face it. You said I called Autism Speaks Nazis for a joke. That's disgusting. The last time someone said that to me on here it was apparently a Joke. It was still tasteless and self-serving.[/quote]

[quote="aghogday wrote:

You aren't every autistic person.

Neither did I say that or indeed infer that. I was just the recipient of a cruel joke involving calling people Nazis. Only a megalomaniac with an agenda couldn't see that.

aghogday wrote:

There is certainly no objective evidence that it is specifically directed at you. The record proves it.

Tambourine-man was making a joke about all people talking about autism and Brain donations as saying that autism speaks are Nazis, which included me. It was offensive. I don't need you playing a semantics game. I don't care if it was specific. it was still an insulting joke and I was included.

aghogday wrote:

Morbid humor yes, but that is what morbid humor is designed for, to take the edge off of reality.

He said that I accused autism speaks of being Nazis. That is crude, distasteful, self-sanctimonious and sounds like a surreptitious personal attack. Not long ago I was protecting him from people saying the very same thing! Anyone who would believe otherwise is just a very nasty soul.

Shame on anyone who thinks that just because somebody says something is a joke, doesn't mean hateful nazi or nazi-caller comments are acceptable, especially from a person who hasn't stopped trying to make wisecracks at a person for days.

Last edited by Gedrene on 30 Oct 2011, 6:22 pm, edited 1 time in total.

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