Wednesday, October 1, 2008

Neurodiversity hypocrites attempt to hijack IACC and CAA

Recently the IACC(interagency autism coordinating committee) has asked for ideas on the direction autism research should take from the general public with a vested interest in autism. Various blogs that are linked by the neurodiversity autism hub have commented on this and have urged persons to file requests.

The autism self-advocacy network has not failed to miss the beat. They have made multiple requests to the IACC and how they should pursue an autism agenda that mirrors the same tired cliches propagated again and again by the ND movement. Not doing research with the intent of curing or preventing autism, not referring to autism as "devastating", or as a "burden". Also, they note the fact that only 1% of the NIMH's budget goes for services to help autistic persons and believe that this should be rectified.

In one of the most bizarre statements they write:

Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.

Along with ASAN president, Ari Neeman, this ND agenda is signed by some other persons as well including the author of the Joy of Autism blog Estee Klar-Wolfond.

If I am not mistaken, Ms. Klar-Wolfond is a Canadian citizen not living in the United States who I am fairly certain has never paid a dime in American taxes. Yet she seems to think for some odd reason that she has a right to make suggestions to the IACC, which is a U.S. government agency created with American tax dollars. Last year, I wrote about two other members of the neurodiversity movement, Michelle Dawson and Mike Stanton who also were writing letters trying to influence the direction of NIMH autism research totally funded with public sector dollars, in spite of the fact that it is very unlikely either has paid any American taxes, yet they feel they have as much right as I have as an American taxpayer to make suggestions for directions U.S. taxpayer funded autism research should take.

I would like to comment on some of these points. First, they seem to think there is something wrong with the fact that 99% of NIMH's budget does not go to these services they so covet. I think there is something wrong with it also, but only because instead of 99% of spending on medical research the NIMH's budget should be 100% funding of medical research. What Ari Neeman and his pals don't seem to understand is that this is the purpose of the NIH and NIMH. You notice the h stands for health. This is because being autistic is being in poor health. Someone who has autism has a disease, a disorder, etc, though I am not sure everyone in the ND movement understands this. This is why the NIH and NIMH were set up to fund medical research and not services. The reason scientific research is funded in autism is the hope to find more effective treatments including prevention and even a possible cure. Some persons in the ND movement seem to think this research is funded so scientists can pay their mortgages and amuse themselves. They should be lobbying congress for services if this is the direction they want autism funding to take, but not under the combating autism act.

You notice the italicized statement about not making autistic children nonautistic but allowing them to function as autistic people so they can maximize their capabilities. Such incredible oxymorons seem to be par for the course for the ND movement. If they function like autistic people this means having language problems, self-stimulatory problems, inability to relate to people, etc. The only solution is for them to function as non-autistic obviously. The ND movement can't have it both ways no matter how hard they try. If they were able to function properly, they would be cured, they would no longer be autistic. Of course the ND movement fails to understand this.

What is most interesting of all, the ND movement seems to want to take advantage of a law that they don't like. We can see examples of this here and here We see by the second example that the CAA was originally drafted by Cure Autism Now, the favorite whipping boy of the neurodiversity movement before they were gobbled up by Autism Speaks. This seems ironic that neurodiversity is clearly opposed to the intentions of this law, which are to prevent and cure autism, yet they want to take advantage of one of its provisions. Seems hypocrisy is pretty rampant in the ND movement. The main reason is that the neurodiversity movement is really very small and weak. The persons involved in it have limited capital and lobbying power. The internet gives the illusion that the ND movement is stronger and more powerful than it really is. This prevents them for being able to pursue their deranged agenda on their own and having to hijack the money that was set aside for something they oppose and for them to try to use it for something other than its intended purpose.

This is aside from the fact that the IACC is pretty much a colossal joke. They have one person on the autism spectrum, Stephen Shore, who serves on the committee that was created for the purpose of curing and preventing autism, yet he himself is opposed to a cure for autism. They also have Mark Blaxill and Lyndell Redwood, who cling to the disproven hypothesis that vaccines cause autism, guiding the direction that research takes. Not that I think a cure for autism will be a reality in the foreseeable future even if the funding bodies did not make so many blunders, but having people like these three on the IACC does not bode well for future research.

This complete hypocrisy of the ND movement is among the many reasons that I urge people to just say no to neurodiversity


Ender said...

So you don't feel educating autistic people is a worth while goal. Yet, you admit that a cure won't be likely in the foreseeable future. I think that you don't want autistics to have a positive life so you feel like doing everything you can do to sabatage it. Charter schools and even simpler things like social skills classes have HELPED autistics, why try to fight these programs. Is it that bad that autistics can have a good life now. If autism is a genetic there will be no cure for autistics already born, just telling ya.

jonathan said...

there might be a cure for autistics already born at some point down the line. Even if there is not, the genetic defect could be prevented in utero and then they could have a normal life. Education, social skills classes have never been shown to be very helpful for the most part. I know this as a former special ed student, which I don't think you have ever been. Even if the education and social skills helped a little bit, they won't even come close to doing what a cure or prevention will do.

I don't want neurodiversity giving people a bullshit line about there being a quick fix easy way that autistics can lead a positive life without a cure, so I will do everything I can to sabotage neurodiversity and their stupid ideas.

Anonymous said...

Obviously you are against support for those on the Spectrum, judging by this entry. Not only that, you completely underestimate the influence America has on Canada. The presumption (probably correct) that Estee Klar and Michelle Dawson have never paid American taxes is irrelevant. Canada is influenced to an extent by what happens in the US. Other countries may also follow their lead, including the UK and Australia. You are underestimating it's importance to other countries. Therefore it is quite reasonable for them to contribute. I would myself if I had time.

There needs to be more support for services to provide the right sort of learning and appropriate employment - or failing that other support on an individual needs basis to provide a decent life. A basic human right. There is no shame in being on the Spectrum, contrary to your view otherwise. I'm not saying it's a walk in the park - it's not. But it's not impossible. Poor health? Yes - and yet you don't seem to want to do anything positive about it! You have skills! So do I! So does everyone on the Spectrum. So why not use them? We can do without this negative talk, because you will send everyone else into institutions when it's not needed as long as the right thing is done.

No cure - because that's impossible. What needs to be cured is this pathetic discriminatory attitude towards the Spectrum. It holds us back and it needs to stop. And how do you define "functioning properly"? Are you daring to define "normal". Don't. That's basic discrimination at it's worst.

"I will do everything I can to sabotage neurodiversity and their stupid ideas."

And I will do everything I can to stop you from destroying the Autistic culture. Einstein just did a somersault in his grave.

Oh - and there isn't a quick fix either way. But there is a fix and Ender hit it right on the head. Education. Proper education. For the NT world as well as those on the Spectrum. Special ed the way you experienced it isn't it for us on the Spectrum. And stop thinking cure or prevention, because it will NEVER EVER happen.

Anonymous said...

If it is genetic, there can be no cure. That's an interesting statement. If the anomaly produces too much or too little of a protein, things can possibly be supplemented or buffered. Look at the Fragile X work. Now you can argue having to take drugs every day is not a cure, but if the work pans out,it would be a virtual one,

There may be ways to correct the DNA itself through viri delivering a snippet of genetic material. We don't know what the future holds. If the DNA can be fixed, would that be a cure?

Autism is dependent on multiple genes making the above much more difficult, but not impossible. It also may be true that not every defect need be fixed before the person moves off the spectrum.

NIMH purpose is to study mental disorders and how they can be mitigated or cured. That;s where they should spend their money.

Other organizations can be petitioned to provide support. Organizations which try to do everything almost always end up doing nothing.

Anonymous said...

Pursuing a cure is like pursuing an expensive and flawed project like the Hadron Collider, whilst there is world energy crisis and a world financial crisis.

The point is these snarks turn out to be boojums more often or not destroying those who pursue them.

Ender said...

Jonathan, you were a special education student when? Is it that unlikely that techniques have improved in the past 30 years to allow people to have a better life now? I have worked with people on the autism spectrum that just with those programs over a few years they go from clearly being aspie/HFA to being nearly impossible to tell if you didn't already know, yet still have many of the positive traits I have mentioned before. I really should get T's mom to come on here and tell you about him, maybe if she gets on tonight I will.

P.S. Are you still going to defend Best after he had no sympathy for the aspie boy killed recently?

jonathan said...

Brian- I was a special education in the 1960s for 8 years there is no evidence that techniques have improved or that social skills helps. I seem to remember there was some study published in JADD that refuted that social skills training had anything positive to contribute but i can't quote the exact study. But I do know this. Social skills means you have to follow a script. Real life is not a script, it is spontaneous that to me shows that it does not work.

You also might be interested in reading my post about nearly half of special ed students failing the california high school exit exam if you have not read it already, in spite of having the IDEA law for years. This suggests to me that special ed has been a collosal failure in remediating the problems of developmentally disabled persons.

You don't understand my position on John Best. I never defended him, except to say that I felt that you should be sympathetic to the fact he has a severely autistic child and is suffering for it. I never defended his bad behaviors or his cybertantrums this is something the ND people, yourself included don't seem to understand. I only suggested that it was very possible that the explaination for a lot of best's behaviors was that he was somewhere on the spectrum, so according to the ND philosophy, they should be accepting him and embracing him rather than villifying him, according to their own philosophy, but again, this is another example of ND hypocrisy.

lurker said...

ender, how can education be pursued for autistics, especially the more impaired ones, when their brains likely are incapable of learning things to begin with? How about curing their impairments as a first priority to prepare for education? What could possibly come from your idea of education besides pushing learning impaired autistics to learn and having someone yell at them to work and learn, and then say they weren't motivated when they end up not having learned something.

What evidence do you have that social skills classes helped substantially besides your own anecdotes from observation? Who will such programs help besides a few HFA/aspies like you mentioned, who likely were already burgeoning?

phil, what the hell can services do? What is the "right sort of learning" and "appropriate employment"? Services seem mostly minimally effective to me. Stop acting like there aren't any skill deficits on the spectrum and implying that those that are impaired aren't trying hard enough! Stop making the people who tell the truth out to be the ones who cause the major pitfalls.

Special education can't seem to help everyone. When I was in it in the early 1990s, my class was packed with non-disabled aggressive lunatics with behavioral problems, while help for my impairments was lax.

"Pursuing a cure is like pursuing an expensive and flawed project like the Hadron Collider, whilst there is world energy crisis and a world financial crisis."
anon, I'm glad that you revealed yourself as thinking the lives of highly impaired autistics are just as trivial and unimportant as some obscure scientific concept, to be put aside for the considerations of the crises caused by able minded gluttons.

Great of you. At least $700 billion to help out financial institutions run by smart people, and more concessions for the oil energy businesses, but table scraps for the mentally disabled! Ugh, these sadistic greedy vermin make me want to put my fists through a wall.

Ender said...

Okay so it has been 40 years since you have been in special education... yet you don't think the special education has changed at all in the past 40 years. WTF... everythings changed in the past 40 years. Beyond that you are wrong about how social skills classes generally work. Generally speaking they work in a way to allow the kid to practice social skills, either with NTs or with other aspies, in a hosile free environment where they get clues as to what they are doing wrong. I don't see how this could harm aspies, and this certainly doesn't mean they are working from a script.

Nearly half of special education students failing a high stakes exam is devestating. How many of those are autistic, how many have Down's, how many have Williams, and how many are aspies. Just saying special education students means NOTHING. Especcially when many aspies are even in the special education system.

And ND doesn't accept everything into their mist. If I was to go on there saying that all Jewish people need to die and saying that the holocaust was justified... I would probably get banned too.

Now on to Lurker, you always seems more reasonable. I have never once said that I was against a treatment for low funtioning autistics, I just think we should also be funding assistance for those already on the spectrum, which a prenatal cure would never acheive. In addition to that I don't think aspies should be cured, but thats for another debate I think.

Sadly, there doesn't exist many studies into social skills programs and charter schools, maybe in a few years. Then agian thats anectdotal evidence is all that supports chelation, and nothing supports the idea of a cure for those who have already been born. Maybe you should be demanding such a study. Search for "asperger's bullied on a daily basis" on yahoo, there is an interesting article about how it can help aspies that ABC Nightline did.

Anonymous said...

Lurker, you live in a country (I assume you are American) where the mental health system is a joke. Pure and simple. Your view has to come from being used to that. I live in a country where this doesn't happen and we have a better idea of how to deal with these things. We're behind the eight ball as well but we aren't as badly off as the US is thanks to a better funded public system. So don't put me down from an inferior position - that isn't your fault, it's the system's by the way.

Services can provide support and comfort. Meltdowns can be reduced by this.

The right sort of learning is teaching basic skills at the Autie's pace. I'm willing to bet that Mitchell's experience came from being expected to learn at a different pace - hence the failure. Your reflection on your own experience bears this out. In your case the environment was the problem - you shouldn't have been put with such people. Special ed in that form is an example of the wrong sort of learning.

Appropriate employment is basically routine and autonomous. The sort of job that's been pushed to the backburner by idiots who think multiskilling is efficient. It should be brought back, especially for Aspies because that's why we were hidden for so long as we were able to hide easily. We can't now.

And I never said there weren't skill deficits! I was pulling Mitchell up on imputing that we have no skills at all, which is NOT TRUE! Just because there are deficits doesn't mean we are useless! Come on! Mitchell wasn't telling the truth by the way. He was judging matters purely on his own experience, which in this case is not a true reflection because he's been successfully pinned down by the NT world. Something that society should be ashamed of. He might see it as true, but that's only because he's been taught that way by a pack of morons.

I agree with your last paragraph.

lurker said...

Well, studies should be done on social skills programs to see if they're effective. But I don't actually call for them to be less funded or used, or even for services to be less funded. But I didn't want them explained as the only things to settle for and push for because they don't help enough.

phil, I'm in America, and I know that the for profit mental health system where I'm from is an awful mess with a lot of misdirection, as the pharmaceutical companies have basically bought off my government. But if the system goes well where you are, why has it handled your employment situation so badly?

What would the pace of autistics be for learning basic skills? I wonder if it would be fast enough to provide learning in a timely fashion. I think for making employment an option, abilities should be taught so those on the spectrum can have the same types of jobs other people have, and can get training for skilled jobs and enter them.

I don't think anyone said that those on the spectrum had no abilities. I think the issue is the inequality that some on the spectrum have so much less abilities than others. I don't see how society's oppression undermines the credibility of Mitchell's experience.

Anonymous said...

Lurker, I never said services were the only answer. Anyway, treatment in a few ways qualifies as service so the two dovetail. I assume you are referring to treatment at home - and I was in no way ignoring that because it is important. Consider this though. To effect that sort of treatment properly requires 24/7 support. Everyone on both sides of the argument would agree about the time factor required to look after an Autie. Does America support something like respite? Australia does. That's an example of where our system is better.

But on that, I never said our system was great and covered all bases. It doesn't - and I for one fell through the cracks thanks to an intolerant pack of morons within a particular part of the employment structure. That's why my employment situation has gone pear shaped. There's an exception to every rule I guess, and I'm doing my best to change that.

What would the pace of autistics be for learning basic skills? I wonder if it would be fast enough to provide learning in a timely fashion. I think for making employment an option, abilities should be taught so those on the spectrum can have the same types of jobs other people have, and can get training for skilled jobs and enter them.

Firstly, you can't have one pace. That's the first adjustment education needs to make because the individual skills and deficiencies are never the same. This means that sometimes the pace can be inherently too slow. But you keep going. Life isn't over at 30 when it comes to working for the first time. It isn't even over in your early 40's - which is why I haven't given up just yet.

Secondly, no. One thing that some may never learn properly is social skills. One can never cover all the bases because society keeps changing. Teaching one to imitate only works for so long. The only proper solution is for jobs to be provided that fit the person, not the other way around.

Mitchell was saying we have no skills. How can you give that any credibility? Society is saying we have no skills, and it's about time we were given the PROPER chance to prove them wrong.

Oh, and don't blame the pharmaceutical companies for the US health system issues. Blame the user pays system in general and the assumption that everyone can get their hands on the cash to support it. It's a myth, a myth that goes back as long as the US has had a free market economy. That's the real reason Wall Street is around the twist right now. The US needs a good dose of socialism.

lurker said...

I don't know much about how services and home treatment work. If there are slow paces, something should be done to make them faster. A way should be devised so everyone can have social skills. I don't remember Mitchell saying anything about anyone having no skills.

I suspect the supply of health care professionals is too restricted in the US, and there isn't always enough to go around. I think the mental health system in my country doesn't seem motivated to seek and implement better strategies. I agree about the US needing some socialism, and I would hope that it would be carried out sensibly.

jonathan said...

i said nothing about anyone having no skills, but this sort of nonsense is par for the course for Guylas.

Anonymous said...

You imputed it by taking the attitude that you're useless and that teaching the theory of social skills is useless. And the fact that you refuse to respect true neurodiversity (the medical fact, not the movement).

Lurker, you can't push the fast forward button (metaphorically speaking) if the Autie can't keep up. If you have to move slowly, that's what you do. One has to cater for all possibilities.

And the reason why you don't have enough medical professionals is because doctors are treated like business people. That's stupid and it's not on. That's what a free market economy does - puts dollar signs on everything and in the case of health that's tantamount to a human rights abuse. Across the board.

And worse, if one uses the word "socialism" in the US, extremist capitalists will roar out "communism" and scare everyone else in the process.

Anonymous said...

Thank you Mr Neuroinsane. I am indeed a victim of your poison. But I'm immune to it! :D

Anonymous said...

Yes, foresam, you know the truth. EVERYTHING else is a conspiracy.
(end sarcasm)

Anonymous said...

Hmmm, 'gadfly'?

2. a person who persistently annoys or provokes others with criticism, schemes, ideas, demands, requests, etc.

Yes, it's a bit annoying whenever you stray onto other's blogs, but I think that 'piss ant' is a much more appropriate image for you. Your buddy JB has featured your blog at the top of his. Congrats, you're bound to get more traffic now!

jonathan said...

Hi anonymous, yes, I persistently annoy and provoke persons who believe in scams like neurodiversity, special education, biomed, DAN, ABA, etc. I believe that someone has to do it, particularly since no one lse wants to seem to stand up to the cyberbullys and hatemongers so rampant in the neurodiversity movement. ergo the name autism's gadfly. You hit the nail on the head.

Thanks for the congratulations. I am always happy to get new fans. Since you obviously read JB's blog you are apparently a fan of his too and I am sure he is happy to have new fans also.

jonathan said...

the comments are closed here for now