Autism Speaks and brain donations

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And I am saying that it shouldn't because I am strictly telling the truth and I make an allusion to something which is a concern greater than just causing offence. That is the danger of autistic children being killed by their parents.

I already make out that I cheer on those parents who do indeed do it for good reason whilst still I think hard about the bad things that could happen.


I didn't say that everyone involved in the programme killed their children. I said it was a possibility that someone might have.
I don't say a person killed a person until I can make a case and I certainly wouldn't suggest that anyone involved in the tissue programme did until I had evidence.
I just said what was important to say: Does the worst come to worst at all?
You were/are a father and the child was autistic? Well that's very interesting and of course tragic! I can see why you might be offended if I didn't make myself clear.
Autism doesn't kill your child. Really bad autism can cause regression but something must be comorbid to kill from what I know. I will ask something and I know you may feel that you don't want to answer so I wont make a comment if you don't want to: How did he?

Last edited by Gedrene on 01 Nov 2011, 3:17 pm, edited 2 times in total.

Excellent! A stunning amount of evidence. Now, let me wonder it doesn't say how quite a few died. It has the bravery to ask who and apparently makes some allusion but does it say method of death? Sadly, no.

Take Aaron Daniel Carey. He died in his sleep. How did he die in his sleep? This isn't definitive. it hints but I don't know. It's a show of face. People are willing to see here's who did this or that. Yet it doesn't say how they died, which is what I ponder very seriously. How dare I ask these questions? I don't care about social protocol. I care about the truth.
Clay Basset is another. He died tragically. of what?
Elyssa crystal long. Says she fought hard. Had seizures apparently. Seizures? She died. Doesn't say how. Possibly the seizures. Don't know.
There is nothing definitive. It doesn't answer anything definitively. It says they died. Well I wasn't arguing that they hadn't died to get on the autism brain bank thing anyway! I was wondering if there is foul play at the parent end at all.

http://www.bbc.co.uk/news/uk-wales-13549363

It is clear that parents have murdered their autistic children whilst juries have made vague claims about them being less than whole under the letter of the law. Stress gets to these parents and they kill their autistic children. Why not anywhere else? Why not under less strenuous circumstances. I am sure that I can find more examples.

Thank you, for acknowledging that the statement by itself could be seen as offensive by an autistic parent. Co-Morbid conditions related to autism, led to my child's death. The kind of stuff that autism speaks is researching that may prevent or treat these conditions in other children. The experience of being an autistic person with a severely disabled autistic child, brings a different perspective.

I don't support autism speaks for autism speaks, I support autistic children. I'm an adult, lived a pretty good life, but my child never had that opportunity. His autism was much different than mine, and I certainly know from first hand experience of having autism myself and seeing the autism that my child had, that there is no real comparison of the difficulties between the two forms of autism.

It doesn't matter if the co-morbids kill the child or the autism kills the child, the child still dies, and the research into providing the potential for the child to live, is vital. Current research suggests that there are genetic links in some of these co-morbid conditions associated with autism, so it's not that easy to separate one from the other completely. We understand them as co-morbid because we can't identify precisely how they might be directly linked to autism, or even understand the direct cause of autism. Research is ongoing to better understand this.

Since you have clarified your statement, it is clear that you think there is a potential of a parent murdering a child and donating the brain tissue, and the parents that wouldn't do such a thing are to be admired for their good intentions, with the tissue program. Someone else brought up a similiar concern, so apparently you aren't the only one that thinks such a thing could happen.

I realize you have your own personal inferences to see it a different way than I do. I provided my inferences, in hopes to provide an understanding how offensive it could be seen by "a parent with an autistic child" or people that run the program, that looks at that first post you made, that provides no explanation of why you would say such a thing. And again, I appreciate you acknowledging it, in part.

People don't normally kill their kids. When one hears these stories about thoughts of murdering a child, often suicide is mentioned along with the thoughts concerning the child. It is the reality of not being able to handle life anymore, and not wanting a child to suffer abandoned, in some of these cases. It is one of the most horrifying potentials of human experience.

If one is young, strong, and healthy, deals with stress okay, it's not possible to say how one would look at a situation in the future if one were older, frail, in bad health, and could no longer deal with stress.

Life changes. I don't think any are in a position, to personally judge those, who have exceeded the limits of their human potential, and have fallen into the darker potentials of life, until they find themselves, in similiar shoes. Fortunately, we have a court system to take care of these type of legal issues.

In these cases it is both the autistic children and parents that need moral support.

If autism is truly genetic, the potential is that some of these parents in question, with autistic children, have autism as well, possibly going through life undiagnosed with their own difficulties of dealing with life as well, because of co-morbid conditions related to autism.

Last edited by aghogday on 01 Nov 2011, 5:56 pm, edited 1 time in total.

I have read this part of your response through a few times now, and it makes no sense to me. What are you trying to say?



I embolded that because it makes no sense. In order to donate a brain, or heart, or lungs, the donor must be dead. It is possible to donate, eg, a kidney, and still be alive, but not the brain.

Children die for all sorts of different reasons, as a result of chronic medical conditions, such as heart complaints or asthma, as a result of illnesses, such as flu or meningitis, or as a result of accidents. Some of those children will also be autistic and the organisations who deal with organ donations in the US have decided to involve a number of organisations, including Autism Speaks, in an attempt to increase donations of brains for research purposes.

From time to time, the NHS in the UK runs campaigns to increase the number of registered organ donors. Even for transplant purposes, there are more patients awaiting transplants than there are suitable organs available and still fewer organs are available for children on transplant waiting lists.

Do you think that parents are likely to murder their own child so that another child can receive a heart transplant?

It is tragically true that many children are killed by those adults who are supposed to care for them - through violence, abuse or neglect. Approximately 1-2 children in the UK die every week at the hands of an adult they live with. I have never heard it suggested that any of these children were killed so that their organs could be donated, and I seriously doubt that such a thought would have crossed the minds of their abusers and eventual killers, even though it is possible that some of those children may have been autistic or had another disability.

It is worth noting that around three times as many children die in car accidents each week, but that doesn't attract the same level of attention, and vast majority of those who do die at the hands of adults they live with receive the same lack of public attention in death as they did in life.

As aghogday has pointed out, those who do kill disabled children more often than not also commit or attempt suicide. These parents should be considered separately from those who kill through abuse, neglect and habitual violence. Instead, they are often people who have been struggling to cope for a long time, and they reach breaking point. It is terrible, tragic for the child and the whole family but it demonstrates, in the vast majority of cases, not a lack of parental love and care, but a lack of support which lets people become so desperate and feel that their options are so limited that death for them and their child is the only way out.

I think the fact they want our brains is a bit creepy.

Just because someone says the word donate and donate supposes consent, that doesn't mean that I can't say say dead or alive. And my point alludes to the weirdness of the whole affair when I saw it and danger of possible abuses. I have no reason to say autism speaks is killing children, no. What I am concerned about is how do people manage to get a hold of dead autistics in a tissue bank. How do they die? Etc etc.


No but I have seen newspaper articles about autistic children being killed in what is described as a mercy killing and what I describe as shame, and in particular another example that stuck out was how an 8-year old autistic child was killed thanks to a weird christian church group through asphyxiation. One doesn't need to think hard about the ignorance implicit in the autism diagnosis, the amount of generalization that occurs and other things. That in itself presents a danger.


And there you go.


I mean no offense but this is an argument from incredulity it seems.


We have one verified case of that occuring. And to be honest even if it was one then it would be too many.


Presupposition of a perfected standard that supports your position. It's also a convenient point. To go back to the original example of I am autism from autism speaks, the woman talked about her suicidal/murderous thoughts whilst the child she was speaking about killing was on her lap and trying to talk to her. You suppose this and that and so forth, of perfected situations based on either weak evidence or supposition. Let's be honest, some people look on their autistic children as subhumans just as some parents would think about their standard children.

We also don't live in the 19th century. There is a support system for these kinds of things. Our institutions aren't like what Bedlam was.

Last edited by Gedrene on 02 Nov 2011, 4:58 am, edited 1 time in total.

I think the article acknowledges that many people do find the idea creepy, by their use of the word taboo. The website does a pretty good of explaining the good intentions behind the request, from the link in the article that takes one directly to that part of their site.

Creepy, but needed. I think it is good we can speak of it here.

It is not Autism Speaks, it is not just the people who gather the brains, it is all the reserchers who try to learn something. It is not one program, it is everything we have.

For one, it has to start with a baseline of the range of normal development. Nothing wrong, just map the patterns seen, so there is something to compare to.

Many of the patterns seen in autism, larger heads, may mean nothing. It may show some areas grow at the expense of others. Like Genetics it is something we only know about, cannot control, but only through study can we possible learn anything.

According to who is speaking, one in a hundred, or thousand, autism, but not a big problem. A few get a much worse version of the same. They take the most care, lifetime costs, institutions, and while their brains may be the most available for study, comparing them to normal range development does not tell the whole story. Asperger's. HFA, BPA, are steps along a path. Why were they lesser affected?

We seem to have gone past Genetics. There is not a clear link between CNVs, and severity. It can go from none to total with the same genes.

Somewhere someone was exposed to something. The lemoney scent of aromatics in dishwashing liquid, eating a pig treated with something just before being slaughtered, triggers a change in a few cells becoming a child.

Maybe. Maybe just Gamma Rays. Study of the structure of the results is needed to even guess, test, model, and maybe find a cause.

I remember how quickly Lead was pulled out of everything.

We keep looking till we find something, even if we never do, we try our best.

Brain Morphology is our best clue, then try to cause the same patterns in rats.

We are getting better, tissue is processed much better, results are scanned into databases, more methods of research are possible. It takes raw data, it might take years, generations, or never, but that is the only way we have ever gained knowledge.

All we can do is give it our best effort with the skills we have.

As for who is involved, we all are, and as for what happens, we can never know. All we can do is try.

I shall be donating them a finger, guess which one.

Lol

But when you are dead it will be your next of kin who decides whether to donate your finger or your brain.

And I say what they give is insufficient given my suspicions.

Quite. And hopefully they'll be a little more mature about it too.

Personally I'd prefer people to not open up my braincase and send my organs anywhere without my specific consent. If anyone doesn't like that well I am sorry but my body isn't your playground.

Meh, I'll be gone and won't need it. It's not like I'll want to start wearing it again.