Autism Speaks & You, or "Autistic children will ruin your marriage"

The Something Awful Forums > Discussion > Debate & Discussion > Autism Speaks & You, or "Autistic children will ruin your marriage"

E-Tank: Aug 4, 2011

This is a discussion that was born in the anti-vax thread and has hopefully been moved here. Information on Autism Speaks can be found here and I'll be putting in a few of the more juicy points here as appetizers.

quote:

Autism Speaks was responsible for �Autism Every Day�, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks� Youtube channel.

quote:

Autism Speaks has violated copyright and has profited off an autistic advocate�s writing for three years.

quote:

There is not a single autistic person on Autism Speaks�
Board of Directors or in its leadership. Autism Speaks is one
of only a few major disability advocacy organizations which
refuses to include a single individual with the disability it
purports to serve on its board of directors or in anything
more than token positions within its ranks.

This is like having a 'Woman Speaks' group where the board of directors are all men. Or a 'homosexuality speaks' where its all straight people, talking about how much of a burden homosexuality is and gosh darnit won't it be nice once we have a cure?

The discussion was currently talking about Autism as a disease, or mental illness, or just a different way of thinking. Some of the arguments, that Autism is bad and there's nobody out there who wouldn't want to cure it. Except there is no cure. I'm going to quote my friend here, who once again knows more about Autism than I ever will. She has struggled, and continues to, but she's one of the nicest people I've ever met.

My Friend posted:

It's questionable whether Autism is a "disease" in any meaningful sense as opposed to simply a difference in neurology with both positive and negative aspects. Tay-Sachs is a degenerative nerve disorder that usually kills people by the age of four. Big difference between that and autism. Or even that and deafness, which is generally considered entirely negative in its effects, but doesn't involve any harm to the person other than being deaf. And last I checked, Autism Speaks does not outright state they want a mandatory cure or genocide... but their complete disregard for autistic people and focusing only on their caretakers means they want the latter, not the actual autistic people themselves, to be in control of the cure/screening, which is all kinds of hosed up.

Some deaf people consider deafness part of their identity, such that being "cured" would make them a fundamentally different person. A "cure" for Autism, if it existed, wouldn't be a matter of debate that it made someone a fundamentally different person -- autism is based on fundamentally different neural wiring from allistic people. In a very real sense, a cure, if it existed, would by its very nature effectively kill the autistic person in favor of having someone entirely different inhabit the body.

Is treating them wrong? No. Is treating them against their will unless they present an actual danger to themselves or those around them wrong? Hell yes. So would permanently curing them if they didn't want to be cured. Consent loving matters. Groups like Autism Speaks don't care whether the autistic person consents to treatment. They just want to make things "easier" for those around them and screw what the person wants.

Also, incidentally, studies found that it's actually a lot more effective for making an autistic person function better to change the people around them -- inform them about autism, and warn them about the issues that cause them and how to deal with it. Autistic kids become a lot more social and functional when they're not being shut off for things about themselves they can't help. Funny how that works

# ¿ Jun 28, 2014 21:24

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# ¿ May 10, 2024 00:48

E-Tank: Aug 4, 2011

Jagchosis posted:

I am not sure what you are getting at with this thread, but I thought YOSPOS was the place to discuss autistic things

http://forums.somethingawful.com/showthread.php?threadid=3619508&pagenumber=16&perpage=40#post431478563

I said where this discussion came from.

# ¿ Jun 28, 2014 21:37

E-Tank: Aug 4, 2011

Tatum Girlparts posted:

This isn't like a women's group or a gay group, autism is a mental disability.

You do remember that homosexuality was at one point, labeled a mental disability and disorder, and attempted to be fixed via chemical castration? Remember Turing, who ended up potentially killing himself over it?

"They're different, they're not normal, therefore they are lesser."

# ¿ Jun 28, 2014 21:56

E-Tank: Aug 4, 2011

ThirdPartyView posted:

So you're saying that autism isn't a mental disability?

My Friend posted:

It's questionable whether Autism is a "disease" in any meaningful sense as opposed to simply a difference in neurology with both positive and negative aspects.

My friend is autistic. I'm going mostly based on her opinions and feelings on the matter.

Tatum Girlparts posted:

So what representation do you want. Do you want a high functioning autistic who wouldn't be the type to want a 'cure' most likely anyway? Do you want an internet aspie who totally is on the spectrum guys one time he arranged his skittles by color just to have a token? Do you want an actual, low functioning, autistic who needs a helper at board meetings to keep him from screaming when people ask him questions?

How about *any* representation? That'd be a loving start.

# ¿ Jun 28, 2014 22:05

E-Tank: Aug 4, 2011

rkajdi posted:

Again, we see the IMO dumb argument that correcting a mental condition makes someone a "different person".

http://www.nbcnews.com/health/health-news/different-person-personality-change-often-brain-injurys-hidden-toll-f8C11152322

http://en.wikipedia.org/wiki/Phineas_Gage

quote:

Harlow described the pre-accident Gage as hard-working, responsible, and "a great favorite" with the men in his charge, his employers having regarded him as "the most efficient and capable foreman in their employ". But these same employers, after Gage's accident, "considered the change in his mind so marked that they could not give him his place again":

The equilibrium or balance, so to speak, between his intellectual faculties and animal propensities, seems to have been destroyed. He is fitful, irreverent, indulging at times in the grossest profanity (which was not previously his custom), manifesting but little deference for his fellows, impatient of restraint or advice when it conflicts with his desires, at times pertinaciously obstinate, yet capricious and vacillating, devising many plans of future operations, which are no sooner arranged than they are abandoned in turn for others appearing more feasible. A child in his intellectual capacity and manifestations, he has the animal passions of a strong man. Previous to his injury, although untrained in the schools, he possessed a well-balanced mind, and was looked upon by those who knew him as a shrewd, smart businessman, very energetic and persistent in executing all his plans of operation. In this regard his mind was radically changed, so decidedly that his friends and acquaintances said he was "no longer Gage".[11]:13-14

In order to 'fix' Autism, we have to literally take the brain apart, and re-wire it. That's also the difference between paranoid schizophrenia and Autism. Autism is the brain is wired and works a different way than normal. Paranoid Schizophrenia is, to my knowledge, the brain misfiring and interpreting wrong information. Leading to potential hallucinations and paranoid delusions.

Rent-A-Cop posted:

Unless your friend is also a doctor her feelings and opinions on neurodevelopmental disorders aren't hugely relevant.

You're right, the feelings, opinions, and experiences of people who actually have the disorders are irrelevant because you say so. I mean gently caress what they have to say about their own issues and experiences, right? You know more than them on this regard. They've just lived it, you've heard about it which clearly gives you much better insight.

# ¿ Jun 28, 2014 22:33

E-Tank: Aug 4, 2011

ThirdPartyView posted:

Lobotomies for all! Hooray!

Well that was the thought process for a while. Got an unruly teenager? Lobotomize him! Depressed daughter? Lobotomy! Child's acting just fine, but you feel like he could be doing more? Time to stick an icepick into his brain!

# ¿ Jun 28, 2014 22:38

E-Tank: Aug 4, 2011

Captain Oblivious posted:

I have Crohn's Disease, my thoughts on treatment of Crohn's Disease mean fuckall.

Yes, these two things are totally the same. After all, we have a group called 'Crohn speaks' that tells you outright that if you have a child with Crohn's disease, your marriage will fail. :v:

Maybe you don't know exactly what the act of treating it entails, but I'm pretty sure you'd be pissed off if someone told you that the EXPERIENCES you have had with the disease don't matter and aren't relevant to a discussion regarding it simply because you're not a doctor.

# ¿ Jun 28, 2014 22:41

E-Tank: Aug 4, 2011

LeJackal posted:

This is one of the things that really chaps me. They can't have any autists on the panel?

Of course not, that would be pretending autists are people instead of a burden placed upon their caretakers.

E-Tank fucked around with this message at 23:56 on Jun 28, 2014

# ¿ Jun 28, 2014 23:54

E-Tank: Aug 4, 2011

rkajdi posted:

No, I'm arguing that your mental facilities are not the essential part of your identity. My argument that "identity" is like "meaning" (as in, what's the meaning of this life?). It's not something real, so there's nothing to hang the idea on, and it rapidly falls apart if you start poking at it.

For instance, you said that Gage was a different person after his accident, but some people who had brain surgery were the same person (some were not, however) Can you draw a red line around what is essential for a person's identity? Is this extensible across all people and also objective? Otherwise, it seems like the whole things is the a little vs. a lot argument. Which tells me that the definitions weren't well defined or real to being with.

In the case of Gage, the portion of his brain that controls his inhibitions was destroyed. He lost any and all inhibition, and had issues controlling himself after. Where he was once a quiet reserved man, he became flippant, angry at the drop of a hat.

Literally his personality changed permanently, because part of his brain was cut out. It ruined his job, and he ended up lonely and without his friends because it had changed him so much. He was no longer the same man he once was.

If you are sitting here saying that your personality cannot be changed by altering how the brain functions, you're loving dead wrong. Traumatic enough brain injuries can result in someone acting like an entirely different person. The trauma to the brain in any sort of 'cure' for autism, would be phenomenal. You'd be rebuilding the brain from the ground up. I'm not going to sit here and say I know it all, and that I know the perfect thing to do. No, I don't believe we should stop trying to research autism and understand it. I don't believe we shouldn't find a way to make things better for people who are autistic. But I do believe that it has to be their choice. Not the choice of a bunch of hypocrites who try and use autistic people as a way to say 'Oh look how pitiful we are because of our autistic burden'. It also has to be their choice in the regards that their parents can't make it for them.

Its a real big step. It's something that could change their lives forever. It could end up distorting them and making them entirely different people. So I don't think even parents have the right to tell their child to do something that could end up hurting them. They should be given the choice when they have become aware enough to hopefully understand the implications.

SALT CURES HAM posted:

For what it's worth I actually am a high-functioning autistic person and if there was a cure for autism created, I would absolutely embrace it. Autism is absolutely a disorder and has inarguably negatively affected my quality of life, and if you're not autistic yourself and you're going to spout some indigo-child bullshit about how I'm "just wired differently" I'd strongly prefer that you go gently caress yourself.

And what if I'm being told by another autistic person that this is what she believes?

# ¿ Jun 29, 2014 00:09

E-Tank: Aug 4, 2011

SALT CURES HAM posted:

Reading comprehension is apparently very hard!

And so is understanding that I'm putting in another person's opinion. Whatever, fine, go gently caress myself.

# ¿ Jun 29, 2014 00:13

E-Tank: Aug 4, 2011

Discendo Vox posted:

OK, I see. My reading was that E-Tank was pointing out that this was a position that Autism Speaks holds, not that this was his own position.

My position is here

Autism Speak's position is that Autism sucks and autists are just huge burdens on everybody and gosh wouldn't it be awesome if we could just get rid of them all?

I don't know what to say, I don't know what to believe. I've offered my friend's opinion, and I'm trying to form my own, based on her, and what has been said here. So far its all just a confusing loving mess. Some people scream that a cure wouldn't be bad. Some people scream that a proper 'cure', as in 'no traces of autism remain' would fundamentally change someone's brain and thus their very self, to the point of killing them.

I don't know where to stand. I know that this needs debate and discussion, hence why it's here.

rkajdi posted:

Note this is from E-Tank's (IMO ignorant) friend, not Autism Speaks.

My friend is autistic, very nice, very sweet, and honestly I trust her over you. Do you suffer from autism? Do you have the experiences she has had? If not then maybe you should not dismiss her so easily.

# ¿ Jun 29, 2014 00:44

E-Tank: Aug 4, 2011

Tatum Girlparts posted:

E-Tank same question, ideal world, woman gets an abortion because she can't handle an autistic kid in her life, how long do we jail her for this murder and why do we not jail the woman before her who just wasn't in a good place for a baby right now?

Because it's her body, it's her choice. I can't force someone to carry a baby to term if they don't want to. Just like I couldn't force them to carry a gay baby to term. Or a downs baby to term. Its her body, she's giving birth to it, so it's her choice.

Not what you expected, is it?

# ¿ Jun 29, 2014 00:47

E-Tank: Aug 4, 2011

Tatum Girlparts posted:

But aren't you against women being able to abort autistic babies? Weren't you one who called it genocide or some other hyperbole?

No? I wasn't?

# ¿ Jun 29, 2014 00:49

E-Tank: Aug 4, 2011

Tatum Girlparts posted:

My bad I got lost in the hyperbole, you posted your friend saying that a cure was 'genocide', totally more reasonable.

Why is a cure 'genocide' then, do you believe Autism Speaks wants MANDATORY curing, where Known Autistics are forced into doctors' offices to be cured?

I don't know.

I don't know because I at the beginning of this, thought I had a firm grasp on it, and now its much more unsure. I do know from the actions Autism Speaks has taken (namely, trying to paint Autism as an always huge burden that will totally destroy your marriage, kill your cat, and ruin your souffle. That the only reason a woman should not kill her autistic child is the real child, that is the only one that matters, that is locked up inside of that autistic shell.) that yes, they'd probably want it to be mandatory to 'relieve the burden on the caretakers' because that's really what Autism speaks is. It's about the caretakers, and not the autistic people themselves. And don't get me wrong, those caretakers? The ones that actually do care? They're awesome. They rock. They're taking care of someone who needs help, and that's fine. Whats wrong is when it becomes *all* about the caretakers.

All I know is that this sparked a discussion, interesting points were raised, and I moved it to its own topic with information on Autism Speaks available for people to look at, and quoted my friend in what she has seen/experienced/feels.

I am trying to figure out where I should stand on this, and if you want to continue to try and dress me up as a strawman, I'm going to just assume you don't know either and move on.

SALT CURES HAM posted:

I'm genuinely not convinced that your friend exists.

Suit yourself, I don't care.

# ¿ Jun 29, 2014 00:54

E-Tank: Aug 4, 2011

Tatum Girlparts posted:

Cite one source. Cite one source that gives you reason to think that they want this to be mandatory other than paranoia.

I cannot find some point where they outright say 'Lets make autism cures mandatory'. Mostly because there isn't a 'cure' as of yet. due to their activities it certainly seems plausible. I'll grant you this point. It is only speculation and 'connecting the dots'.

Tatum Girlparts posted:

Also, you selfish fucker, those 'caretakers' are loving mothers and fathers and brothers and sisters. These aren't nurses that spend six hours with them, these are people who have spent their loving LIVES with these people suffering from an extreme end of the illness, who the gently caress are you to dismiss their desire for both them and their loved one to live a normal life?

I do not mean to dismiss them. I'm talking about people who literally had a member of their board say the only reason they did not commit a murder-suicide(6:20) of them and their autistic child is the 'normal child' that they already had. I'm talking about people who seem to believe that autistic children have no loving worth unless they are cured. I'm talking about Autism Speaks in that regard, not caretakers who genuinely care and who genuinely want their loved ones to be happy. I'm sorry that I made it seem like I was dismissing all people's wishes for their children, and themselves, to be able to lead a normal life.

Tatum Girlparts posted:

All this invoking autistic people, have you ever worked with the severely autistic? I don't mean hanging out with your friend I mean going through a three week period where you get punched and kicked because you're a different helper than they're used to and that just ruins all the hard work people have done getting them to be level, and feeling like poo poo because a grown man is bawling in horror because someone new didn't know you can't smile to him and talk to him and she made the horrible sin of saying 'hello' as she walked in and now you have to clean this up.

No, I haven't. I realize now that what I've been saying has been very insensitive to those who have. I'm sorry for that.I didn't mean to, but that is no excuse.

Tatum Girlparts posted:

You're legitimately the worst person in this thread, I want to be clear. Sedan and Jackal and poo poo are arguing in the abstract but you're hiding behind 'well my autistic friend said...' like a coward while you insult a group of people who have legitimately gone through a very hard time who want people to understand that autism is an illness that hurts more than the person it's in. You are, in the spiritual sense, a terrible human being.

I'm not trying to hide behind her. I am stating what she has said, and basically been my main experience in this regard. I'm clearly not informed enough about this subject to be commenting. Thank you for opening my eyes to that. I'm sorry Tatum, I didn't mean to do anything that hurt anybody. I'm just going to bow out, and just...watch. Maybe I'll learn something.

# ¿ Jun 29, 2014 01:44

E-Tank: Aug 4, 2011

Tatum Girlparts posted:

How do you have such a lack of empathy that you don't understand that person wasn't telling that story as some loving bragging rights thing, but rather as a horrible, shameful, example of the devastation the illness caused them? Why do you not understand that the point is that they want a world where those hosed up thoughts don't exist because they can be fixed?

I don't know. It just didn't occur to me. The idea of her saying the only thing that kept her from committing suicide and murdering her child was the normal child. It struck me and got me outraged and I just...didn't think about any other possibilities. I'm in the wrong, I understand that now. I'm sorry.

# ¿ Jun 29, 2014 02:05

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# ¿ May 10, 2024 00:48

E-Tank: Aug 4, 2011

Goddammit guys, I was trying to let the thread die with some grace. Guess I should have just closed it already. :sigh:

For those of you just joining us, I was an idiot. I said a lot of dumb things, and I'm sorry for them.

# ¿ Aug 31, 2014 17:10

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