Cures, Autism Speaks, and what's up with us medically

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Inkjetdev
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13 Oct 2012, 5:08 pm

I've seen some interesting posts on this forum, regarding cures and Autism Speaks. I'm going to be real with you folks, and whether you take offense or not, care or not, listen or not, or believe it or not, it needs to be said.

First and foremost, as this whole community is aware, AS is BS, but not quite for all the reasons that I've seen. Going after a "cure" is a waste of time and money. They pool their money into cure projects with no feasible end, continue vaccine research, portray autism as something terrible where a person with it has no redeeming qualities, and have no representation within the autism community itself. AS focuses on a goal which we may not have the technology for yet (Given the brain is effectively wired differently and changes as a person grows up) instead of assisting people with autism and their parents learning how to cope and deal with the obstacles that arise from the condition.

That said...

The discussion of whether or not you would accept a "cure" has interesting points. There exists, at this point, no "cure" for autism, nor is there any solid known way to approach it. Even prevention is up in the air. I re-discovered WP when a friend of mine was browsing, and came across an interesting question. Depending on the severity, and don't you folks dare pretend this isn't true, some people on the autism spectrum may be unable to work based on how a symptom or symptoms manifest, and to what level. So what happens to a person on disability if a cure or effective treatment to mitigate the symptoms is found?

In addition to Asperger's Syndrome, I also have bipolar disorder. I've been on various types of medication since I was in the 2nd grade, and I'm quite familiar with the fear of medication changing "who you are." So my question to you folks is, what's the difference between treating the symptoms, and removing them altogether? I see so much anger manifesting in so many of you, and some of you are ready to take up arms and shoot anyone who tries to cure you, yet want to shoot yourselves because you are so lonely and depressed.

I'm more than familiar with Asperger's Syndrome. I'm not going to pretend that I'm some sort of autism authority, but I can say this much: Through programs for people with Asperger's that I've been to in the past, to another program that I am now an employee in, I've met and have gotten to know ~30 adults on the autism spectrum. People ended up in those programs because they were unable to function in everyday life, and the programs exist as an attempt to give the person the necessary tools to survive. The parents of these people are paying tens of thousands of dollars for their adult children to be there, and even that program can't claim a 100% success rate. Autism Speaks certainly unfairly portrays autism as a terrible, terrible thing, but the fact stands that many people on the autism spectrum need extra help in life that can cost a great deal of time and money.

Being off and on so many medications, and currently being on a cocktail of them, I certainly know what having my mental state change, in so many ways, is like. It's not the worst thing in the world, and if anything, it gives you the ability to appreciate what you've been given. I'm (probably) never going to be neurotypical, but being given the tools to function in everyday life has been a cornucopia of emotional relief.

There exists no cure. There may be no cure. There's nothing to be ashamed about having what you've got. Just learn to respect that despite the hand you've been dealt, you've still got to do your best to overcome your personal hurdles, even the ones that may be a core part of you. You may have your own circumstances, but you can't let that dictate an inability to have a positive outlook.

Best of luck to all of you.



Prof_Pretorius
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13 Oct 2012, 5:53 pm

It's not just Autism Speaks, it's all of these "Help Us Find The Cure" charities. All you have to do is dig a little and you realize that what they really do is "Find A Way To Stay In Business." So much of the money that people donate in all earnestness goes into the pockets of the people solicting that money. A cure? Where's the cure the cancer? Haven't we donated billions towards that? And people continue to die of it every day. A cure for AS? How? They have no clue where it resides or what it looks like, as opposed to cancer, for instance. These charities make me sick. When I get asked to donate money I tell the person I don't donate to ANY organization like that.


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rachel_519
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13 Oct 2012, 8:40 pm

Prof_Pretorius wrote:
It's not just Autism Speaks, it's all of these "Help Us Find The Cure" charities. All you have to do is dig a little and you realize that what they really do is "Find A Way To Stay In Business." So much of the money that people donate in all earnestness goes into the pockets of the people solicting that money. A cure? Where's the cure the cancer? Haven't we donated billions towards that? And people continue to die of it every day. A cure for AS? How? They have no clue where it resides or what it looks like, as opposed to cancer, for instance. These charities make me sick. When I get asked to donate money I tell the person I don't donate to ANY organization like that.

You can see where their money went in 2011 and get other info about them from the Better Business Bureau website:
http://www.bbb.org/charity-reviews/nati ... /financial

And here is a report directly from the Austism Speaks website: http://www.bbb.org/charity-reviews/nati ... /financial

They do spend quite a bit on fundraising (23% of their budget), but their administrative expenses are fairly low (4% of the budget).
To compare, the American Cancer Society spends 11% of their budget on fundraising and 9% on administration.

(I am not arguing for or against this organization or any other. I am just pointing out some relevant websites.)


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Inkjetdev
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14 Oct 2012, 12:54 pm

Prof_Pretorius wrote:
It's not just Autism Speaks, it's all of these "Help Us Find The Cure" charities. All you have to do is dig a little and you realize that what they really do is "Find A Way To Stay In Business." So much of the money that people donate in all earnestness goes into the pockets of the people solicting that money. A cure? Where's the cure the cancer? Haven't we donated billions towards that? And people continue to die of it every day. A cure for AS? How? They have no clue where it resides or what it looks like, as opposed to cancer, for instance. These charities make me sick. When I get asked to donate money I tell the person I don't donate to ANY organization like that.

Sorry if I'm necroing the thread, life, etc.

AS rally is a BS organization, but one of my points regarding the thread wasn't inherently to say that AS is a bad organization, but that some of the policies and ideas make sense. How it applies to real life, and how people on the autism spectrum would apply it is entirely different.



PHISHA51
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14 Oct 2012, 2:09 pm

This link might help. It is kind of related to this topic

The "Cure" for Autism and the Fight Over It.


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btbnnyr
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14 Oct 2012, 2:53 pm

Most of the progress on a cure seems to go like this:

Make "autistic" mice, somehow.
Give them something to make them act normaler.
"Autism" cured.
Cure for "autism" on horizon for hoooman children.



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14 Oct 2012, 3:29 pm

Well a couple points of my own than:
I am one of those people who cannot work due to my condition, and I do not particularly wish for a 'cure' in the sense that I would not want to be neurotypical....as for treating unpleasant symptoms or being rid of them I cant complain there but I don't know that all my autistic traits are 'unpleasant' for me so I would not want to try and become more neurotypical.

So I think society should be open to the idea that there are people who function differently than normal, and not treat such people like garbage or demanding that they overcome their hurdles and fit in. Why should we put all the effort in? it just doesn't make sense.

I don't think I would shoot someone if they wanted to cure me....if they wanted to force a treatment I was not comfortable with on me then I would decline and if they still tried yeah I'd resist don't think I'd have a gun to shoot anyone with anyways. As for myself well yeah sh*t sucks but curing the autism wouldn't help that.

Also I do not think one must have the goal of overcoming 'all' of their hurdles if you would like to give it a go have at it. But in my experience it doesn't work so well for me I feel sometimes it is ok to accept things as they are and work around it than totally 'overcome' everything I mean I don't know if that's even humanly possible.

As for a positive outlook, things are not positive in my life or in society or the world so why would I have a positive outlook? It's fine to have one but if its not how you feel there is no reason to pretend...this comes from years of trying to act positive while suppressing true feelings so I'm done with that approach.


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Inkjetdev
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14 Oct 2012, 4:40 pm

Metaphor time Sweetleaf:

One thing my father told me was that everybody has their own personal hurdle, a wall if you will, and you have to get over it. It may seem impassable. You approach this wall with your bag of metaphorical belongings, look at that wall, and choose to go home where it’s safe and warm. Or you can take that bag, and throw it over the wall. Now you have motivation to get over the damn thing. The best way to motivate yourself is to put something at stake which you value. We all have something we can put on the table. But to do that you need to set a goal. You might not always know what goal to make. Your goal might even be to not make any goals. But we all have something we’re trying to achieve. Take a look and ask yourself what you've accomplished in the past year. Make a list, and don’t sell yourself short. Hopefully you've pulled off a lot despite your own personal barriers, and your goals should reflect that. Remember, you as a person is effectively the sum of your goals and accomplishments.

So climb that wall. You may not find what you're looking for on the other side, but you’ll find something more important: A better, more experienced you that just took on another one of the world’s challenges.

(And remember that there's always someone out there that's happier than you, with less than what you've got)



Sweetleaf
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14 Oct 2012, 5:11 pm

Inkjetdev wrote:
Metaphor time Sweetleaf:

One thing my father told me was that everybody has their own personal hurdle, a wall if you will, and you have to get over it. It may seem impassable. You approach this wall with your bag of metaphorical belongings, look at that wall, and choose to go home where it’s safe and warm. Or you can take that bag, and throw it over the wall. Now you have motivation to get over the damn thing. The best way to motivate yourself is to put something at stake which you value. We all have something we can put on the table. But to do that you need to set a goal. You might not always know what goal to make. Your goal might even be to not make any goals. But we all have something we’re trying to achieve. Take a look and ask yourself what you've accomplished in the past year. Make a list, and don’t sell yourself short. Hopefully you've pulled off a lot despite your own personal barriers, and your goals should reflect that. Remember, you as a person is effectively the sum of your goals and accomplishments.

I wouldn't be surprised if the wall is too high. Also I really have not made any accomplishments in the past year unless dropping out of college, developing worse symptoms and 'breaking up homes' or at least causing more problems than already exist due to not being able to take the stress or pain anymore.

Also I think what makes a person goes a little deeper than the sum of their goals and accomplishments I mean things like failures, pain, personal experiences and many other things define a person in my opinion. But that's just how I feel about it, I don't think there is a right or wrong answer here.



So climb that wall. You may not find what you're looking for on the other side, but you’ll find something more important: A better, more experienced you that just took on another one of the world’s challenges.
(And remember that there's always someone out there that's happier than you, with less than what you've got)


I suppose I have gotten sick of climbing...or maybe burnt out on it. Also that last bit may be but it does not decrease the pain I feel, since the pain I feel has got nothing to do with what I don't have, what is the point in having anything if you can't enjoy things due to being mentally ill. Sure hopefully I can get help with it and maybe things can be more manageable and not cause so much pain but i suppose i don't feel like that's much of a goal. I know the partial reason I feel this way is due to having PTSD and not having it treated soon enough, not sure how I would see things if I had.


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