Saturday, January 03, 2009

Change.org Blows It BIG TIME Putting Neurodiversity Ideologues in Charge of Alleged Autism Blog

Change.org is a positive contribution to public life; in the United States and around the world.

One of its most unfortunate decisions made of late though was to start an alleged "Autism" blog site and then stack it with two blogger representatives of the anti-cure, anti-treatment Neurodiversity movement. One of the bloggers is Dora Raymaker a very high functioning person with an autism spectrum disorder and prominent member of ASAN and Dr. Kristina Chew, a parent of an autistic child, blogger, and professor of Greek and Latin classics. Both are adherents to the Neurodiversity Ideology which does not view autism spectrum disorders as medical conditions, opposes cures for autism, objects to autism distinctions based on functioning levels despite common sense and their use by expert autism researchers and medical professionals, declares not only that there is no cure for autism now but that there never can be such a cure and tries with every breath to discourage research into possible environmental causes of autism.

The latter effort is becoming ever more desperate as research now has begun on many fronts based a new paradigm of autism research one that works on the basis that there is an interaction between the genetic and the environmental causes of autism. Another jolt to the omniscience of the Neurodiversity movement came in 2008 with comments made by no less an authority than Dr. Bernardine Healy that necessary clinical research into possible environmental causes of autism has not been done and has in fact been discouraged for reasons of public policy, principally the potential impact on public vaccination programs.

The Neurodiversity movement has some parent adherents, of which Ms Chew is possibly the best known, but most parents are too sensible to subscribe to an ideology which dictates that efforts to cure their children of their neurological disorders are wrong and should not continue. The ND movement is offensive and a violation of the human rights of autistic children whose parents represent their interests not strangers with little in common. But the ND adherents serve a useful purpose for media outlets looking for a new angle and for pubic administrations that do not want to spend monies on treatment and research into autism cures.

The Change.org Neurodiversity blog has come out with guns blazing by listing 10 Autism Controversies and then putting a blatantly one sided Neurodiversity spin on all 10 of those controversies. To the full credit of Ms Raymaker and Dr. Chew they did not try to create any illusion of balance or objectivity. Every controversy is described and resolved from a Neurodiversity perspective.

What the two ND ideologues did not do was canvass ALL of the autism controversies particularly those created most directly by Neurodiversity ideologues like Ms Raymaker and Dr. Chew. What they did not do was discuss the controversy over the legal, moral or common sense basis on which these people tell OTHER people how they should raise, care for and protect THEIR autistic children.

The greatest autism controversy arises from the unmitigated gall, audacity and arrogance which sees ND ideologues tell parents of autistic children who can barely understand language or the world that they have no right to speak on their children's behalf. Instead Neurodiversity advocates assert that THEY , high functioning, highly articulate, strangers, with little in common with severely autistic children, should speak on behalf of those children in place of their actual parents. The fraud and hypocrisy arising from this incredible arrogance are part of a reprehensible misrepresentation taking place in world autism discussions. It is a fraud which seeks to deprive autistic children of the protection of their parents and violates their human rights.

Change.org has waded into the autism wars by appointing one party to those wars as the official Change.org blogging voices. In doing so Change.org has sided with an irrational movement which in fact seeks to prevent treatment and cure of autistic children and even prevent open, honest discussion of autism realities.

With this decision by Change.org the autism wars have just been taken to a new level of hostility and confrontation.




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12 comments:

Apple_Mark said...

Harold
last time i looked up change in the dictionary it didn't say "to accept and not alter".

Autism Reality NB said...

Apple Mark

What is your point?

Anonymous said...

Can you leave out adjectives like hostility? What good does using that language do for anybody?

Autism Reality NB said...

Anonymous 9:18

I understand your concern about the use of the term hostility but have you ever read the debates that take place on the autism blogosphere? They are marked by hostility. That is a fact.

I do not agree with the views of Jenny McCarthy or David Kirby but the things that have been said about them by some Neurodiversity bloggers can only be honestly described with a term like hostility and that is putting it mildly.

Providing a high profile platform for one side of those debates will increase that hostility. And will alienate those who do not share their views.

Autism Reality NB said...

Anonymous 9:18

I understand your concern about the use of the term hostility but have you ever read the debates that take place on the autism blogosphere? They are marked by hostility. That is a fact.

I do not agree with the views of Jenny McCarthy or David Kirby but the things that have been said about them by some Neurodiversity bloggers can only be honestly described with a term like hostility and that is putting it mildly.

Providing a high profile platform for one side of those debates will increase that hostility. And will alienate those who do not share their views.

Sandy said...
This comment has been removed by a blog administrator.
Sandy said...

Harold, I went to the site you mentioned and read the most recent post on autism advocacy and the comments by her readers.

I won't mention anyone by name, but what she writes is pure magical thinking. The world, unfortunately, is not going to completely change and be unconditionally accepting just because the neurodiversity crowd wants it to be so.

And, suggesting somehow that recovery, as in no longer seeking treatment, is preferable to ABA and other treatment options, is as you say, not only unethical but wrong on so many levels.

I remember the first time I wrote in favour of funding for ABA therapy on my blog. I was completely taken aback by the personal attacks. The hostility is certainly not helpful in the long run because when it comes to funding treatment programs, politicians, bureaucrats and school boards just get confused.

I know something about the "long run" that many involved in autism advocacy do not yet know about.

Having a son with ADHD and Aspergers who is now 43, I have fought the good fight for a very long time. Parents change once their children grow up and they (the parents) realize there are few treatment options available to adults and that, in fact, their next worry is what will happen to their child when they are no longer here.

That is where I am now at.

So, for that reason, keep up the good fight. I have put your RSS on my side bar to get your message to more people.

Navi said...

The person who accused Kristina Chew as being against ABA obviously hasn't read much of her blog. Kristina Chew does have her son participate in ABA therapy. She is against adversives, not ABA. ABA has largely evolved over the years and doesn't generally use adversives anymore. There are some neurodiversity bloggers that are against it. She is not one of them.

The real neurodiversity: accept AND help. Reducing stigma will do things like, encourage those that have nothing to do with it to agree that insurance should pay for treatments, rather than thinking, it's not going to do much help, and I'm going to end up paying for it in the long run, so no, I don't want insurance or my government to cover it.

And no, acceptance probably won't happen in our lifetimes, because prejudice against disability runs deep and autism is sorely misunderstood by those with no experience with it, but it doesn't mean it's not worth fighting for.

I have the same right to take my son out into the world, to get him educated, to give him the best possible outcome as as I do for my daughters. It's not 'no treatment'. Just like a person in a wheelchair should be treated like another person but still needs that chair and needs ramps available to them, and if the potential for walking was available, would receive physical therapy.

And I think Apple_Mark's point was saying change.org shouldn't accept bloggers asking for acceptance, however only a few who believe in neurodiversity have the opinion of 'not alter'. And pushing for acceptance for those with disabilities is asking for change. With 19% of the population in the US having some form of a disability, and I'll take a wild guess that a significant percentage of those disabilities lie within the arena of mental and neurological health, we most definitely need to push for acceptance of those with disabilities (and not just autistics).

Unfortunately what people who scoff at the idea of neurodiversity fail to realize that if we can get the ignorant to see that these are beautiful people that desperately need help, maybe more people would be willing to help, rather than look, say oh, 'well that's them and not me, and I don't care.' Or, 'they're just spoiled little brats who's parents don't discipline them.'

Foresam said...

Hi Harold,
Did you notice how "Dr" Chew deleted all of my comments from the change.org blog after her cronies could only respond with insults?

Someone is sending me a copy of them so I'll have the whole discussion up on my blog soon where "Dr" Chew won't be able to hide from them.

Neurodiversity is great at presenting propaganda but they aren't very good at answering for their words. Thanks for setting them straight.

kristina chew said...

On my (Kristina Chew's) thoughts about ABA, please see this article I wrote for Meeting Point, the newsletter for the Lovaas agency.

http://www.lovaas.com/meetingpoint-2007-06-feature-02.php

Apple_Mark said...

Harold my point is that these 2 bloggers are not going to raise any money for autism or do anything helpful. I think its just going to be anothe "hub" Page,
good to see you on AoA.
best regards

Autism Reality NB said...

Dr. Chew

Your comments on the Lovaas site about ABA were generally positive. On your own site though you have both downplayed ABA and played up to the negative, outdated, characterizations about ABA as you did in your October 12 2008 post
“Costs,” Insurance, “Treatment,” ABA in which you questioned whether ABA should be an insurable "treatment" and stated:

"Given the troubled history of ABA and behavior therapy, it’s contested whether or not it’s a “therapy” that should be used."
For context for that statement you linked the reader to a post by a blogger self titled "Autism Diva" whose views of ABA were stated by her:

""Some people seem to be surprised at the amount of disdain Autism Diva manages to convey in her descriptions of Applied Behavioral Analysis. Autism Diva is holding back. She has lots more contempt for ABA than she is showing.""

Autism Diva, who refers to herself in the 3rd person made that statement as part of a comment about physical abuse as an element of ABA which included some old b&w photos of man apparently slapping a young boy and the Autism Diva stated:

""This man slapping a little boy hard on the face and screaming, "NO!" isn't Ivar Lovaas (eevar loovahss), he's a man who was trained to slap little children and scream at them by Ivar Lovaas.""

And the Diva also stated:

""Of course, not all ABA is like what is described in the 1965 article about Lovaas and his lab. Some is worse. Some is less overtly abusive."

The article which you directed readers to clearly created a picture of ABA as abusive,using 1965 vintage photos of one man apparently slapping a boy. The Autism Diva's qualifications about modern ABA is a variation on damning with faint praise. Some is worse. Some less overtly abusive. And you referred readers to THAT description of ABA?

You were positive about ABA, described as an educational therapy, on the Lovaas site but on your own site frequented by Neurodiversity and Autism Hub commentators where you by contrast pandered to their anti-ABA hostilities.