Autism Speaks: I was Wrong.

[SirNitram]

Those who know me well know I hate being wrong. It means I made a mistake somewhere, and in my overly-analytical phases, I can become tied up in that, scouring for a mistake I can't remember, beating myself up. Thus I will get to the meat and potatos, which I believe is the saying.

In the past, I have advocated Autism Speaks. I don't know if I did it in this forum. It seemed, on the surface, like just another 'Autistic parents trying to do the right thing' group. In the safety of my own experience, I assumed this was nothing bad.

Hoooo-boy. Was I wrong.

I will go down what I learned, and feel free to join me in disgust.

1) Imagine there was a site advocating for women's rights, and what they believed, in their dearest hearts, was the right way to treat a woman and their rights and their existance. Now, imagine this group had no women in it. You need not, of course; a number of religious groups have done this throughout time. We accept they are bad people.

Autism Speaks has no autistics in it's governing body. None influence policy. None are given the voice they claim to want to listen to, into the group's own workings. I've not found anyone who even claims to have a Spectrum Disorder in the ranks.

2) Autism Every Day. Say you went to see a movie, and it was billing itself as a gutsy and courageous look into the reality of being a woman. They did not interview women. The actions of the women, in some cases, were later found to be staged. In one sequence, in front of his wife, a man describes wanting to put her in the car and drive off of bridge, because it's so hard for him. They purposefully chose women who would 'act out' in the ways that would cause the most viscereal reaction possible.

Take the above paragraph and change 'Women' to 'Autistic Children'. Okay, you got it.

3) This is where shit gets controversial. The weak of spirit should run the fuck away. I bring up the most controversial subject among autistics themselves:

The Cure movement.

I admit myself being torn, but gradually am coming to be against. I finally sat down, after long articles for and against, and realized something. Groups like Autism Speaks, and other parent-focused groups, have one message for those on the spectrum.

Your existence hurts me.

Stop it.

Stop existing so I don't have to be troubled by it.

You're hurting me. Why do you want to hurt me? I just want you to not exist.

Actual folks on the spectrum want a cure for their own, varied reasons, but revolve around,

I don't want to force you to be anything but you.

But I can't keep this up.

I need to be like everyone else.

I think that attitude is bad.. Being 'cured' won't change you into a normal person.. But I can understand that more.

But the next time someone talks about helping an autistic kid, in their very young years, become normal, be careful. Think about the message.

If it's Your existence hurts mommy. You won't like this. But we'll make you stop hurting mommy. It doesn't matter that you don't understand. perhaps it's time to consider a different approach.


This is brought on mostly by conversations with others with the spectrum disorders. Times are better.

No one my age in the spectrum will start having a flashback if you say 'restraints', for example.


Okay, I'm done. I ranted alot. I shouldn't do that.

[Buddha]

I feel your pain, and I think that now you'll be able to forget about it. Don't dwell on somthing like this. At least you got it off your chest. I know how easy it is to get absorbed into a cause (mine was Tibet and China btw) and not be able to do anything. Let it go.

[Norseman]

Add this: "When a woman tries to parody this group they sue her and force her to remove the parody." Link.

[Broomstick]

Were you wrong, or were you deceived?

There is a difference, you know. Being "wrong" implies you had full access to the facts and you came to an erroneous conclusion. Being "deceived" means you did not have all the facts, in fact, facts were withheld from you that, had you known them, would have led you to a correct conclusion.

It's a chronic problem with ALL disabilities that you have parents who want to "fix" their children for the parents' benefit and not the child's; that there are people who will take advantage of/victimize the disabled, often for profit; and there are folks who just want to shuffle the different out of sight.

Sometimes, the rational response is adaption and not cure. If a child loses a leg to accident or illness we do not sit around waiting for the limb to regrow, nor do we expect a treatment that will regrown a limb (even if we support research for such we realize the pay off is way down the line), we get the kid a prosthetic limb so he/she can stand up and walk again. Or at least a wheelchair to get around in. Likewise, it seems to me that the rational response to autism is not so much a cure as to find a way to enable people on the spectrum to live better lives for their benefit and not to make those around them feel more comfortable.

[SirNitram]

Were you wrong, or were you deceived?

Insufficient Data For Meaningful Answer.

Is believing the Cure movement was like the search for a cure to cancer or Alzheimers, searching for a medically provable cure that will truly remove the problem, instead of the reality(Behavioral modification, aversion therapy, pharmatherapy) being 'wrong', or being deceived?

That's how I got caught up. Now I'm terribly disillusioned.

[Broomstick]

Hmmm.... interesting question.

Yes, there is appeal to a "cure" - something that makes it all better, that takes away the negative while leaving the positive. Perhaps, one day, we will have that.

But in the present... adaption may be more realistic.

Dare I say that hoping for a cure for one's troubles is normal? And finding there is none is, of course, disillusioning, which is also normal. That does not, of course, take away the hurt.

[FOG3]

From my experience, and I'm on the spectrum, the perhaps best explanation would be to go back to the old CISC vs RISC CPU processor debate as an analogy.

Part of the contributing factors to this effect is that those on the spectrum seem to actually take in more. This in turn leads to requirements for more robust modeling then a Neurotypical will tend to utilize. This either leads to competent Autistic that can practically mind read a Neurotypical off their patterns and otherwise having built more robust modeling, or those that have failed and have more limited functionality. There's kind of a sticky "hold true" problem if that makes any sense in so short an explanation.

The other contributing factor to an Autistic brain is we have... more limited circuit length, specifically in the minicolumns. This also ties in with smaller neurons that actually increase efficiency on the base circuit basis much like increases in processor technology involving smaller transistors. This allows the Neurotypical to use more conditioning based programming due to both reduced input and longer circuit path potential. Meanwhile an Autistic brain trying to emulate this will run into walls that need to be bypassed by a different approach that is much more labor intensive. Given I have spent the last year figuring out how my brain works and figuring out how to optimize it, that is not a theoretical btw.

While there are also issue with mercury naturally being more dangerous to smaller neurons using tighter meshes and the known gut issues that can arise in some cases that in many respects ignores the heart of the issue.

As for the social issues based on my personal experience and talking with others on the spectrum I believe this largely derives from the same problem that would arise if you had a set of x86 machines networked with protocols heavily based on assumptions of x86 architecture and you hooked up a Power PC Mac to said network. A Neurotypical can get by because easier simply because it's easy to emulate a x86 on a x86 and thereby figure out how to effectively respond. Emulating a x86 on a PowerPC, especially when the x86 doesn't understand how it operates and isn't about to tell anyways if a different kettle of fish. Anyone who doesn't think this is true can try to lie with a straight face that they've never encountered "difficult people" where their sims are rendered invalid and they're sent scrambling.

An Autistic mind operates really, really well when you get things refined down into generalizable, robust models, and implement them. Or in other words the basic design goals and design philosophy of a RISC processor. A Neurotypical can get by with less refined modeling being analogous to an x86's questionable efficiency in various things. Same basic machine, slightly different design architecture leading to far reaching consequences.

Before anyone berates Autistics for failing to effectively sim Neurotypical's x86 analogues I would point out for the last several millenia Mean have routinely failed to figure out and thus be able to accurately sim Women despite them having more similarity then Autistics and Neurotypicals. Even the psychologists have been epic failures at actually creating a unified model, for various reasons. I suppose it is natural as it involves going places most would tend to avoid.

[Broomstick]

That might be enlightening if I understood what the fuck you were saying.

[Phantasee]

That might be enlightening if I understood what the fuck you were saying.

I'm with Broomstick here. What the fuck was that?

[Buddha]

That might be enlightening if I understood what the fuck you were saying.

He saying that they can pick up on stuff a lot better due to a attention to detail. What he doesn't say is why he needs to use such long winded language to say it. He fails to realize that maybe his use of big words is only a mere smokescreen and his itelligence is another smokescreen.

Now, buddy do you really understand what you wrote there? Yes you with the Spectrum thingy. Do you understand how we do not comprehend whatever you call that? Maybe you can read my mind and find out that I do not get what you wrote.

[Superman]

Now, buddy do you really understand what you wrote there? Yes you with the Spectrum thingy. Do you understand how we do not comprehend whatever you call that? Maybe you can read my mind and find out that I do not get what you wrote.

I wouldn't be quite as hard on him, Buddha. Overly formal and pedantic language is actually a symptom of an Autism Spectrum Disorder, so it's probably safe to say he's doing what comes naturally. Of course, it's also safe to say that Broomy's reaction is what he should expect. I'm just pointing out that he's probably not trying to confuse people on purpose.

[SirNitram]

Actually, he's comparing brains to computers. Mind you, it's hard for me to keep up in that, so.

[MKSheppard]

But the next time someone talks about helping an autistic kid, in their very young years, become normal, be careful. Think about the message.

Yeah. I will. I'll think about you.

Do I want this kid to grow up to be like Martin?

Then I'll go and help them.

By your logic, I better go back to my old Elementary school and tell Jane Smith and Lucy Barwell "thanks a lot for fucking me up!"

Yeah, nevermind it was thanks to Mrs Smith and Mrs Barwell's hard work that I moved from being a tyke who couldn't talk at all -- when I wanted something, I had to point at something or grab an adult and pull them over there.

(I learned that story from Mrs Barwell, about the first time she visited my home when she was starting to work with me when I was just a pre-schooler when I went back to Flower Valley to see them both).

Your logic disgusts me and sickens me.

[SirNitram]

But the next time someone talks about helping an autistic kid, in their very young years, become normal, be careful. Think about the message.

Yeah. I will. I'll think about you.

Do I want this kid to grow up to be like Martin?

Then I'll go and help them.

By your logic, I better go back to my old Elementary school and tell Jane Smith and Lucy Barwell "thanks a lot for fucking me up!"

Yeah, nevermind it was thanks to Mrs Smith and Mrs Barwell's hard work that I moved from being a tyke who couldn't talk at all -- when I wanted something, I had to point at something or grab an adult and pull them over there.

(I learned that story from Mrs Barwell, about the first time she visited my home when she was starting to work with me when I was just a pre-schooler when I went back to Flower Valley to see them both).

Your logic disgusts me and sickens me.

Logic seems to have that viscereal effect on you.

But given this is the second response in a short period where it's nothing but 'Hey, Martin's whining, I'm gonna insult him because I think I matter', I really don't give a shit.

[Illuminatus Primus]

I thought it was hilarious, but that's me.

[Buddha]

Yeah. I will. I'll think about you.

Do I want this kid to grow up to be like Martin?

Then I'll go and help them.

By your logic, I better go back to my old Elementary school and tell Jane Smith and Lucy Barwell "thanks a lot for fucking me up!"

Yeah, nevermind it was thanks to Mrs Smith and Mrs Barwell's hard work that I moved from being a tyke who couldn't talk at all -- when I wanted something, I had to point at something or grab an adult and pull them over there.

(I learned that story from Mrs Barwell, about the first time she visited my home when she was starting to work with me when I was just a pre-schooler when I went back to Flower Valley to see them both).

Your logic disgusts me and sickens me.

Why do you need to blast Nitram? He said in his post (at the end, at least act like you read it!) that it was a rant. He probably wasn't thinking about how it looked or what anyone would think. He didn't write it with you in mind. Maybe he doesn't think that the cure thing is all that grand given the history of the movement and the cruelities inflicted. Putting people in warehouse like places akin to mental hospitals at the turn of the century. Think about that and maybe you will understand.

[MKSheppard]

Logic seems to have that viscereal effect on you.

No, your retarded brand of logic has that effect on me.

Do you realize how goddamned profoundly INSULTING your little logical chain of "don't help a kid become a normal person" has on people who have serious disabilities?

What you're doing here is insulting pretty much everyone, from my teachers, interpreters, and my family, who helped me come to grips with my disability and develop into a pretty well functioning person to an extent that wouldn't have been possible 30-40 years ago.

[SirNitram]

Logic seems to have that viscereal effect on you.

No, your retarded brand of logic has that effect on me.

Do you realize how goddamned profoundly INSULTING your little logical chain of "don't help a kid become a normal person" has on people who have serious disabilities?

Funny, not what I actually said. When you are able to comprehend what I actually wrote, not what you want to think I wrote so you can continue to stamp your feet in this sad little vendetta, you are free to attempt again.

[MKSheppard]

Funny, not what I actually said..

Don't play word games with me. You know damn well what you said.

It's obvious you really have no contact with people with disabilities; because what you said is so profoundly insulting that it's nearly impossible to put into words how disgusted I am with you.

My worst fear in the world is for my son or daughter to be born deaf, like I was. If that did happen, it would totally crush me emotionally and physically.

By your logic, if that happened; I shouldn't seek speech therapy and cochlear implants for them, because I'm seeking a solution for my kid's deafness "hurting me".

Well, I have only one thing to say to that logic chain.

[Sriad]

I will translate for the last 4 posters, though of course if FOG3 disagrees I'm wrong.

Translation begins:

From my experience, and I'm on the spectrum, the perhaps best explanation would be to go back to the old CISC vs RISC CPU processor debate as an analogy.

Part of the contributing factors to this effect is that those on the spectrum seem to actually take in more. This in turn leads to requirements for more robust modeling then a Neurotypical will tend to utilize. This either leads to competent Autistic that can practically mind read a Neurotypical off their patterns and otherwise having built more robust modeling, or those that have failed and have more limited functionality. There's kind of a sticky "hold true" problem if that makes any sense in so short an explanation.

Autistics have more neural circuits than "normal people" but the circuits are shorter. They input more data, but do correspondingly less analysis of the data they observe. To relate to a "normal" point of view they have to commit a lot of effort and do specialized thinking they aren't used to; high-function autistics can pull it off, low-function can't.

Think of an autistic person as a whole lot of simple, low power processors running in parallel, and a "normal" person as one big honkin' high power processor.

The other contributing factor to an Autistic brain is we have... more limited circuit length, specifically in the minicolumns. This also ties in with smaller neurons that actually increase efficiency on the base circuit basis much like increases in processor technology involving smaller transistors. This allows the Neurotypical to use more conditioning based programming due to both reduced input and longer circuit path potential. Meanwhile an Autistic brain trying to emulate this will run into walls that need to be bypassed by a different approach that is much more labor intensive.

Elaboration: when an autistic tries to think like a normal person, they have to do it iteratively, committing a lot of (sticking to the computer analogy) clock time to the problem, feeding information through their PR circuits over and over.

Given I have spent the last year figuring out how my brain works and figuring out how to optimize it, that is not a theoretical btw.

While there are also issue with mercury naturally being more dangerous to smaller neurons using tighter meshes and the known gut issues that can arise in some cases that in many respects ignores the heart of the issue.

Trust me, I'm autistic.

Environmental conditions (or vaccines) may not cause autism, but there is evidence that they can be a finger on the scales. [maybe. Didn't totally follow there.]

As for the social issues based on my personal experience and talking with others on the spectrum I believe this largely derives from the same problem that would arise if you had a set of x86 machines networked with protocols heavily based on assumptions of x86 architecture and you hooked up a Power PC Mac to said network. A Neurotypical can get by because easier simply because it's easy to emulate a x86 on a x86 and thereby figure out how to effectively respond. Emulating a x86 on a PowerPC, especially when the x86 doesn't understand how it operates and isn't about to tell anyways if a different kettle of fish. Anyone who doesn't think this is true can try to lie with a straight face that they've never encountered "difficult people" where their sims are rendered invalid and they're sent scrambling.

Autistic people don't get along well with "normal" people because their programming is different, because their wiring is different, as stated earlier.

An Autistic mind operates really, really well when you get things refined down into generalizable, robust models, and implement them. Or in other words the basic design goals and design philosophy of a RISC processor. A Neurotypical can get by with less refined modeling being analogous to an x86's questionable efficiency in various things. Same basic machine, slightly different design architecture leading to far reaching consequences.

Before anyone berates Autistics for failing to effectively sim Neurotypical's x86 analogues I would point out for the last several millenia Mean have routinely failed to figure out and thus be able to accurately sim Women despite them having more similarity then Autistics and Neurotypicals. Even the psychologists have been epic failures at actually creating a unified model, for various reasons. I suppose it is natural as it involves going places most would tend to avoid.

If you set up the input correctly and can understand the output, autistic people can be brilliant. Check out this kid on Jazz Piano. Or talk to this guy about Prime Numbers. Actually don't, he'll go on for days. "Normal" minds do their problem-setup as part of the internal computing process eating into the clock-time that an autistic would spend on the actual problem, but making them adaptable to deal with a much wider array of problems.

And seriously, don't rag on the autistic for not getting along with you until you can get along with women. You know how much harder you lot are to get along with than women? Of course not, because you're not autistic.

Translation ends.

How'd I do?

[SirNitram]

Except my logic chain is not what you wish it was. I do not oppose treatments that produce people who can function in society, like you or I. I oppose the endless quick-fixs of the Cure movement. Things like Behavioral Modification, which has at least gone from strapping people down to restraints for hours and classic aversion therapy to mind-numbing repetition and negative reinforcement only when they are distracted. It doesn't help them cope, as anyone whose read a Low-Functioning Autistic's account of going through it and being with it after will know, but it makes the parent feel better.

I oppose the reckless 'Throw pills at it' solution where there's so little research done into a prescriptions effects on Autistics before being pitched as a miracle cure. Shep, you were helped. I was helped. Neither of us was doped up on anti-depressants and found it hurt to touch people lightly. Neither of us was given some random drug because it clearly had to be something else.. And wound up catatonic. Treatment for deafness is, to my knowledge, not throwing drugs at the problem.

The mere fact you can respond to me with such annoyingly logic-free personal attacks is proof you didn't go through this sort of treatment. I will emphasize this: Seeking a cure for autism is not like seeking a cure for cancer. They want a panacea right now, anything to turn their kid into 'normal'.

Now. For the damn few and uncelebrated who search for real cures, for those who developed the treatments I went through, and so forth, they are the heroes. They are not seeking to slap a painting of a person over someone they don't like. They just ensure you can fucking cope.

Am I clear, Shep? Or are you going to go off in a huff like in the last thread you barged into simply to make a drive-by personal attack, waiting for the next chance to yell how nasty I am?

[Sriad]

Logic seems to have that viscereal effect on you.

No, your retarded brand of logic has that effect on me.

Do you realize how goddamned profoundly INSULTING your little logical chain of "don't help a kid become a normal person" has on people who have serious disabilities?

Funny, not what I actually said. When you are able to comprehend what I actually wrote, not what you want to think I wrote so you can continue to stamp your feet in this sad little vendetta, you are free to attempt again.

I have to provisionally side with Shep here. Saying we shouldn't look for a cure for autism is a lot like walking up to the next pregnant woman you see and saying "Isn't it great that your baby has a 1% chance to develop neurological oddities which will cost you hundreds of sleepless nights and hundreds of thousands of dollars? "

Trying to cure a condition is not the same thing as saying that people with the condition have no value. Does the prosthetics industry imply that people who lose limbs should walk into the ocean?

...I do see where the objections could come from though. I think I'd like to post a more thoughtful give-and-take post when I feel like committing an hour to writing it.

Edit: Nitram, hook me up with some links to info on "The Cure" people before I spend a long time on a post. If there are a lot of quick-fix half-measures it would be worth a paragraph or two of flaming.

[SirNitram]

Edit: Nitram, hook me up with some links to info on "The Cure" people before I spend a long time on a post. If there are a lot of quick-fix half-measures it would be worth a paragraph or two of flaming.

Here's a Low Functioning Autistic's take. You may have caught Amanda on CNN. She can communicate but only because someone introduced her to a computer.

Link

I'll not quote. It's a little depressing to re-read.

[MKSheppard]

Please see above post; I realized some people have no interaction with what sort of cures they pitch.

I love that logic chain. I really do.

I once watched a pro-deaf culture film against cochlear implants. And one of the highlights of the film was watching unedited surgery room footage of a cochlear implant being inserted.

The implication was "look how icky and gross that implant is! They cut a hole in your skull to slide it in!"

The logic that you're employing right now, is the exact same logic that "Deaf Culture" whackaloons employ.

[SirNitram]

Please see above post; I realized some people have no interaction with what sort of cures they pitch.

I love that logic chain. I really do.

I once watched a pro-deaf culture film against cochlear implants. And one of the highlights of the film was watching unedited surgery room footage of a cochlear implant being inserted.

The implication was "look how icky and gross that implant is! They cut a hole in your skull to slide it in!"

The logic that you're employing right now, is the exact same logic that "Deaf Culture" whackaloons employ.

Explain how 'Look how icky it is' is comparable to 'It's really quite unpleasant to be given whatever pill this is without any goddamn testing' or other such treatments. Really, please. I'll wait.

You keep trying to re-cast this in your head, because you apparently don't get it: They do not want an autistic that can interact. They want to behavioral-mod someone no matter what. It does not matter if they function: They must be identical.