What is so bad about Autism Speaks?

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Well for starters, try the National Autistic Society of which I'm a member www.autism.org.uk and there's Umbrella Autism www.unbrella-autism.org.uk and there's www.red2green.org and www.mugsy.org and I could go on and on. Oh BTW NBD, debate's one thing, mudslinging's another on WP; so if you want to take it there, I'll see you on the Autism Squeaks forum or better still

I happen to be fond of the Autism National Committee, despite some of the pseudoscience some members and leaders there are into. Also, Autism Network International. Autistic People Against Neuroleptic Abuse, although they're more single-issue. And then a group that I don't know the name of that recently formed in the UK, and sound like they are doing really good things.

Tolkien once said that it's easier to write a lot about a day when there are difficult things and things going wrong, and that really good days make a much shorter story. (When explaining why he didn't describe everything about Rivendell, despite describing a whole lot about the journey there.) Perhaps the same is true of talking about organizations: There is less to remark upon when things are going well.

anbuend, do you mean www.think-differently.org.uk ?

No, although that's also a good one. I meant the one where autistic self-advocates and allies are trying to get support, advocacy, and technology, and other things, available to autistic people in institutions including non-speaking ones. Larry Arnold and Dinah Murray are involved. I have had so much of an ongoing health crisis that I haven't been able to talk to them about it, much to my annoyance.

Cockney Rebel, the mother is not a b***h. She's sharing with the world that she's despondant over her situation. Everyone's seen this video where she says she wanted to end it all. But, have you ever considered that someone like that may be the BEST PERSON to speak for Aspergians who have come to the end of their ropes? Or, other parents who didn't have hope and nobody to turn to. Look at all the threads on this board where people are despondant, talking about life not meaning anything, saying they were suicidal or had thoughts of that. This mother can relate to those people. She knows what that's like. She understands that grief and pain.

So, while you're putting her down, I say what better person to advocate for changes in society...a mother who's been at the edge of a cliff overlooking it, not wanting another human being to ever be in that same spot? Now she's in a position to change things not just for her daughter, but for everyone on the spectrum.

Again, walk a mile in someone else's shoes and see if they fit.

Peace.[/quote]
She's SMILING while saying that...

Smiling is a common primate response that, contrary to popular belief in some particular Western cultures, does not always have to do with happiness. It can also be fear, grief, or an expression of submissiveness. Additionally, I heard someone describe seeing an interview in an Asian country where the more the interview subject described awful situations, the more the interviewer smiled. It was explained to the person that, if the interviewer did not keep smiling, the interviewee would conclude that she was hurting the interviewer with her descriptions of bad things, and that she should stop talking.

And while there are all these various cultural uses of smiling, there are still the instinctive reasons people smile. People laugh at funerals, it's very common to go into uncontrolled laughter when facing something horrible. Even our sense of humor is frequently based on coping with bad situations.

I sometimes smile when I am afraid, horrified, shocked, disgusted, absolutely exhausted with being tired of something, or in mourning. I would hate to be judged as happy in those situations just because I have more trouble suppressing my basic primate response patterns to fit my culture better. And as much as I do not think this thing should have been said, in the way it was said, in the place it was said, and in the context it was said (I do think there is a way to discuss this responsibly, but I don't think that way was what happened here)... I can't bring myself to then turn around and judge someone else for potentially having basic primate responses when they say it. The smiling isn't the problem here.

I used to have (and sometimes still do) a problem with smiling at really inappropriate times, especially when I was telling the truth and someone didn't believe me, or when it's really important to keep a straight face.

So yeah, just saying. Not every facial expression always means what it's "supposed" to mean. Like my "deep in thought" stare that people always freak out about and go ZOMG WHAT IS WRONG PLEASE TALK TO ME.

Yep. That's it.

Actually, now that I think of it, I've had a couple of those super crazy moments where everything was so nuts that there was nothing left to do but smile/laugh like a madwoman.

Yep. Now that's really it. Honestly.

Last edited by KristaMeth on 21 Feb 2008, 7:29 pm, edited 1 time in total.

Absolutely horrible way to treat anyone, let alone a child. Am glad I was never diagnosed or given a label when I was young.

Remember she's NT though (Which means they're "normal")...she doesn't show any remorse and says that she only didn't do it because she has another daughter who NT, or "normal". How sick is that!?!

One, how can a person tell she's NT? (Even if she's not autistic, there's lots of ways to be non-NT without being autistic.) Two, NTs were among the examples I gave of people who sometimes smile when nervous, fearful, upset, etc. Just because autistic people often cover it less well than usual, doesn't mean everyone else covers it perfectly.

I'm not going to walk around actively looking for things to dislike about someone just because they're doing something I find horrible.

It depends on what is considered a cure. If a cure is equal to a lobotomy or changing my personality or soul, I wouldn't want it. But if a cure involves taking away my social awkwardness, my high anxiety, my inability to know what is going on half the time, my zoning out, my trouble with eye contact, my trouble with knowing when something is a joke or not, etc ad nauseam, but left ME the same ... my core personality and soul, then I'd say "Yeah, bring it on!"

I've never been insulted or angered by certain groups wanting to cure autism, because I never assumed that they meant they didn't like ME, I figure they don't like the parts of me that make me suffer. I hate to think that they have an evil or selfish agenda. Maybe I'm just gullible and naive.

FYI, your opponent is not America, so she may not have the same understanding of this issue. As I am well familiar with the legal protocol in the U.S., I will address this issue:

First, the legal right to free speech is not absolute. There are limits on this right. First of all, the government can restrict the time, place, and manner (1). The only aspect of speech to which this freedom applies is to content. And even the freedom of content is not absolute. Content can be abridge when said content poses a "clear and present danger", as stated in Schenck v. United States (2). So not even this fundamental freedom is considered absolute. And freedom of speech does not protect us from what our words effect. If a judge were taking this into account in, say, a custody hearing, he would immediately rule that this mother's words indicate that leaving this child in this mother's care would not be in said child's best interest, as the mother is too unstable to be trusted with the life of another human being.

Moreover, you are making an argument that attempts to justify a persons social statement through the Constitution. You're using a legal criterion on a social issue. This clearly cannot be applied.

Lastly, while there is de jure freedom of speech, there will never be de facto freedom of speech. While you have the right to say what you will, you will never be excused from the social consequence of your statements. The consequence come two-fold: first, the idea that you communicate (and the way in which you communicate it) affects people, and the fact that you are willing to communicate it affects people. What this woman said was that, as an alternative to placing her autistic daughter in a public school, she contemplated killing herself and her daughter. She then asserts that it was her neurotypical daughter who compelled her to spare her daughter. At no point did she ever act like this feeling was wrong in anyway. This willingness to kill shocks and offends many, but not half so much as the fact that she was not only willing to admit it, but willing to have it viewed by the masses to cause them to donate to a cause. The absolute "icing on the cake" is that this woman "confessed" all of this in front of her autistic daughter. Since then, Autism Speaks has repeatedly refused to issue any sort of apology for this statement despite the demands of autistics. It has simply been further advocated.

Also, I want to call your attention to the fact that it was love of the woman's neurotypical daughter, which I interpret to be "the daughter whom she could love". People say that autistcs don't empathise; neurotypicals generally have no concept of what it is like to be autistic. If neurotypicals are unwilling to love autistics, then they are considered reasonable, but if autistics are unwilling to love neurotypicals, they are given therapy and told that they must adapt.

And last, but not least, autism isn't extricable. The statement "I want to cure you." means "I want a different person (a neurotyical person) to live in your body."


Footnotes

(1) http://ogc.arizona.edu/white_paper_sja_ ... sembly.htm

(2) http://www.law.cornell.edu/supct/html/h ... 47_ZO.html

Additionally, just because a person has a right to say something doesn't mean it's a good idea to say it, or that there is no responsibility involved in how they end up saying it. There is a legal right to do a whole lot of things that there are very good ethical reasons not to do. (And there are sometimes ethical things that are not legal in any given context, too, so it goes the other way as well.)

What he said.

You know, I wrote a giant response to this, but I give up. If you want to try to demonize this woman with law citations and court cases, then go ahead. Life is not that f***ing simple. People are not always peachy about having autistic children who they may or may not be able to parent without immense effort that is completely different from parenting an NT child (which she was obviously accustomed to), may or may not be able to communicate with or teach to communicate, and require all kinds of special care which the average parent is just not prepared for. If you want to act like having an autistic child should be AWESOME and f***ing PEACHES and that the only explanation is that she only loves normal people and wants to kill all autistics, then go ahead. I guess there's no possible way for you to have sympathy for someone who's story you don't even really know, who's life you've never lived, and you guys are just going to continue making judgments based on things like the fact that her relationship with her NT daughter was good - as if that makes her a rotten person.

Screw you guys, I'm goin' home.

And as for that crap, I'm going to take this definition from Mirriam-Webster:

"2 a: recovery or relief from a disease b: something (as a drug or treatment) that cures a disease c: a course or period of treatment <take the cure for alcoholism>"

Seriously. Can you be more ridiculous? I want to be "cured". I might use the word "treat" because I understand that there is no cure right now. But does that mean I don't want to be me? No. It just means that I know there is a better me, a me that is more like what I yearn to be inside, a me without the disorders.

If you've got a mother of an autistic kid here, and the autistic kid has such sensory overload problems that they can't even comprehend when they're walking in front of a moving car on a busy street, I'd say it'd be worse to NOT want to treat or cure.

It's harmful to sugarcoat autism and act like it's some gift from God and just f***ing pretend that it won't affect the child in negative ways, or keep them from being healthy and happy. Because it can, and it does.

Even with a high functioning form of autism like AS... if I found out my child had it I'd be ready and raring to go to "cure", to hopefully spare him from the crap I've had to deal with in my life. The fact is that the world is NOT made for people with disorders, and since that isn't going to happen any time soon I want to give my child every chance he can possibly have to live his life to the fullest. What is bad about that?

You just don't have the right to decide what someone means when they say "cure". You may be able to define it for someone else who isn't here to defend themselves, but you're sure as hell not going to define it for me.