"Recovery from autism is neither possible, nor desirable"

Correction from David Kirby:

Change.org v Change.gov and Autism Recovery

Yesterday, I received several emails from parents of children with autism who were concerned about an autism blog that they thought was posted at the official website of the Barack Obama Transition Team, www.change.org. On the blog, it says that, "Recovery from autism is neither possible, nor desirable"

Shortly after posting it, someone alerted me that this website was at www.change.org, and was not affiliated with the President Elect. Though I take small comfort in knowing I am not the first person to make that error, I take responsibility for the mistake.

However, I am not sorry for what I wrote about autism recovery. The basis message remains the same. I repeat some of my original post again here, which I will also send to change.org:

"Recovery from autism is neither possible nor desirable,"

Those words were written by the two women hired to head up the new autism blog at www.change.org -- Kristina Chew, who has a son with autism, and Dora Raymaker, an adult on the autism spectrum.

These women believe that autism is a genetic disorder that children are born with, and is simply part of natural human diversity. They are generally opposed to those who would seek to "treat" autism, or try to recover a child from the spectrum.

I am sure that Dr. Chew loves her son very much - and she loves him just the way he is. That is fine and admirable. But Dr. Chew does not speak for the countless thousands of parents that I have met who love their children just as much, but don't think of their children's condition as inevitable, nor as something to celebrate.

For these thousands of parents, autism is not a quirky nod to human diversity. It is a nightmare without end.

I have seen their wonderful children. I have heard them wail in pain the whole night through, bang their heads into dented closet doors, hang their inflamed and pain-wracked bellies over the sofa back in vain attempts for deliverance from the agony they cannot describe, because they can no longer speak.

I have seen children with autism run out of the house naked and into the cold, black night, only to be found hours later wandering down a lonely back road.

All of these children were perfectly normal before they "got" autism, at around age two, or so. Like their parents, I cannot look at them without thinking that recovery from autism, for them at least, is most desirable, indeed.

But is it possible?

Based on my personal experience over the past five years, it is. I have met dozens of children who are now completely, or almost completely "recovered" from the disorder. They have had their diagnoses taken away. Their state-sponsored services have been happily jettisoned.

These kids are virtually indistinguishable from their peers - with girlfriends and boyfriends, teammates and college plans.

But they did not just spontaneously recover - they were recovered, through behavioral therapies, dietary changes, vitamins, biomedical interventions, or various combinations thereof.

So, the people who were chosen to run this autism blog don't want to find treatments for autism. They don't believe that autism is epidemic, and don't think there are environmental factors involved in its cause.

In fact, they are not particularly interested in even finding out why children have autism in the first place.

"Focusing on what causes autism diverts attention away from considering issues of pressing concern to actual autistic persons and their families today," they wrote, which seems like an odd representation of a man who ran for President on a pro-science agenda.

Everyone is entitled to their opinion, and to the right to express their opinion. Parents such as Dr. Chew have the right to withhold autism treatments from their son. And they have every right to question - and even criticize - those parents who do want to treat and recover their children.

Like many Americans, even President Elect Barack Obama has an old, dear friend with an autistic child. It is hard to imagine the President - or anyone for that matter, saying to this parent: "I do not think we should devote resources to finding out what happened to your son. I do not believe there is anything we can do to make him better, and it is not desirable to even try."

Recovery from autism may not be desirable for everyone. But it is possible for many. And for the thousands of loving parents that I have met all over America, it is the most joyous, desirable thing in the universe.

David Kirby's Original Post:

"Recovery from autism is neither possible, nor desirable"

It's hard to believe that those words would appear anywhere on an official website of the United States Government. But there they are, on the new Autism Blog of President Elect Obama's transition team at www.change.gov.

They were written by the two women the Obama people hired to head up what could ostensibly be described as the "National Autism Blog" - Kristina Chew, who has a son with autism, and Dora Raymaker, an adult on the autism spectrum.

These women believe that autism is a genetic disorder that children are born with, and is simply part of natural human diversity. They are generally opposed to those who would seek to "treat" autism, or try to recover a child from the spectrum.

I am sure that Dr. Chew loves her son very much - and she loves him just the way he is. That is fine and admirable. But Dr. Chew does not speak for the countless thousands of parents that I have met who love their children just as much, but don't think of their children's condition as inevitable, nor as something to celebrate.

For these thousands of parents, autism is not a quirky nod to human diversity. It is a nightmare without end.

I have seen their wonderful children. I have heard them wail in pain the whole night through, bang their heads into dented closet doors, hang their inflamed and pain-wracked bellies over the sofa back in vain attempts for deliverance from the agony they cannot describe, because they can no longer speak.

I have seen children with autism run out of the house naked and into the cold, black night, only to be found hours later wandering down a lonely back road.

All of these children were perfectly normal before they "got" autism, at around age two, or so. Like their parents, I cannot look at them without thinking that recovery from autism, for them at least, is most desirable, indeed.

But is it possible?

Based on my personal experience over the past five years, it is. I have met dozens of children who are now completely, or almost completely "recovered" from the disorder. They have had their diagnoses taken away. Their state-sponsored services have been happily jettisoned.

These kids are virtually indistinguishable from their peers - with girlfriends and boyfriends, teammates and college plans.

But they did not just spontaneously recover - they were recovered, through behavioral therapies, dietary changes, vitamins, biomedical interventions, or various combinations thereof.

So, the people who were chosen to run Obama's autism blog don't want to find treatments for autism. They don't believe that autism is epidemic, and don't think there are environmental factors involved in its cause.

In fact, they are not particularly interested in even finding out why children have autism in the first place.

"Focusing on what causes autism diverts attention away from considering issues of pressing concern to actual autistic persons and their families today," they wrote, which seems like an odd representation of a man who ran for President on a pro-science agenda.

Everyone is entitled to their opinion, and to the right to express their opinion. But now, I think, it is time to hear the opinion of the incoming President.

I have written to Change.org and asked them if Mr. Obama shares the view that autism is purely genetic, and that it is not only impossible, but "undesirable" to try to recover children from its grips.

Parents such as Dr. Chew have the right to withhold autism treatments from their son. And they have every right to question - and even criticize - those parents who do want to treat and recover their children.

And I understand that this is a blog - it does not necessarily reflect the official thinking of the incoming Administration.

But it is fair to ask where Barack Obama and his health team come down on this important issue - Do we as a nation try to "recover" children from autism, or do we not?

The President Elect has an old, dear friend, going way back to Chicago, with a young son on the autism spectrum. That friend will soon be a Senior White House Official.

It is hard to imagine the President one day saying to this man: "I do not think we should devote resources to finding out what happened to your son. I do not believe there is anything we can do to help him, and it is not desirable to even try."

But maybe he will.

Recovery from autism may not be desirable for everyone. But it is possible for many. And for the thousands of loving parents that I have met all over America, it is the most joyous, desirable thing in the universe.

I will let you know if I hear back from the Transition press office.

Comments

[AnneS]

"Recovery from autism is neither possible, nor desirable"
I find Ms Chew's wording offensive. By making such a conclusive statement, she is essentially calling me (and other parents that have recovered their formally-diagnosed children) a liar.
Of course recovery is possible. Easy? No. Possible? Yes.
Ms Chew may prefer living her life the way she chooses, but she should not continue to state an old mistruth that autism recovery is not possible.
I intend to share my opinion with the staff at autism.change.org

[AutismNewsBeat]

It depends on how one defines "recovery". How do you define recovery, Anne?

[Moi]

I have the same question as Autism NewsBeat - what recovered in your child? How old is your child?

[AutismNewsBeat]

I think we've stumbled across the Achilles Heel of the autism cure industry. In a traditional sense, recovery means "return to normal". If in fact thousands of children have been recovered from autism, then where are they? Why haven't the DAN! doctors published verifiable reports of these miracles?

[ouroborous]

Oh, dear god. It's the "vaccines are bad" brigade. I sometimes fear for the political Left, and if this is the caliber of thinking on the Left, we're in very bad shape indeed.

Several deadly childhood diseases -- previously thought extinct or under control -- are making a comeback, and the evidence points to the anti-vaccine movement as the cause, since parents are convinced by the unscientific fear-mongering that is circulated as fact by this group in press releases and "informational emails." Thus, the anti-vaccine movement, while claiming to protect children, is actually putting a large number of kids at grave risk.

I don't know Barack Obama's stance on autism, vaccine risks, and so on. But if he's serious about restoring science to a position of respect in his deliberations, he must also accept its conclusions -- even if those conclusions are unpalatable to a minority of the population because they offend their religious dogma. And that is what the belief that there are hidden, suppressed dangers in childhood vaccines IS -- a religious cult with its own dogma. It has detached itself from all reality, feeds only upon its own conspiracy theories, it mistakes lawsuits for peer reviewed science, and ultimately it is doing more harm than good to the children it pretends to serve.

[CraigWilloughby]

What is it with you people? Just because we are asking for safer vaccines, and that many of us are recovering our children from autism, you think that we are among a grand conspiracy to get rid of vaccines entirely and bring back "deadly childhood diseases" (though, I can't for the life of me find ANY references to the last time a child died of Chicken Pox). Really, how many people would have to be in on that conspiracy? And all of these "deadly childhood diseases" are making a comeback? Last year in America, we had an "outbreak" of measles. 136 cases of measles...­.out of 300 million Americans. And how many deaths? 0!

What was that about fear-mongering?

With you people, it's all or nothing; we are either for the current illogical vaccination schedule, or we are anti-vaccine, a point proven by Paul Offit's scathing comments regarding Dr. Sear's alternate vaccination schedule. I recall another group that had similar views; you were either for them, or against them. Therefore, I think it's time to call you and the rest of the Quackosphere what you are; the Vaccine-Nazis.

[AutismNewsBeat]

Measles killed 200,000 brown children last year. Do they count?

[AutismNewsBeat]

Your knowledge of 20th century European history is matched by your grasp of the natural sciences.

[Moi]

Craig - We all want safe vaccines. Let me ask - What is recovering in your child? How old is your child?

[bluevalentine]

"(though, I can't for the life of me find ANY references to the last time a child died of Chicken Pox). "
Or the last time a child contracted Hep B at school.

Wanting a safety proven vaccine schedule has absolutely nothing to do with getting rid of vaccines.
And the bullying that goes on over the desire to have something proven safe before making it mandatory for all children is NOT asking too much...it is the law.

[AutismNewsBeat]

I find it amusing that AoA's "Journalist of the Year" is confused by .org and .gov.

HInt: Gov is short for government. There are three branches of government in the US, and Merck is not one of them.

[hanjo]

AutismNewsBeat,

You need to inform Merck that they are not a branch of the government because right now, they are heavily involved in all three. BTW: Just curious. Did you know that it is a felony in Illinois to videotape record private conversations without at least one party's consent?

[usna73]

So, it must have been all those "fanatics" who concocted the "U.S. Federal Court of Claims" NVICP, wasn't it? It couldn't have been the political shills of the pharmaceutical industry who sought to "protect" Big Pharma from adverserial litigation due to what they themselves describe as "adverse reactions.­"

Don't lecture us while instead demonizing the victims. That is too transparent.

[Orac]

"Oh, dear god. It's the "vaccines are bad" brigade. I sometimes fear for the political Left, and if this is the caliber of thinking on the Left, we're in very bad shape indeed."

Sadly, antivaccine lunacy is not by any means restricted to the left. Remember, the biggest antivaccinationist in Congress is a conservative Republican (Dan Burton), and Ron Paul has been known to oppose mandatory vaccination laws. Unfortunately, antivaccinationism is the pseudoscience that spans political ideologies.

[CamJam]

Mr Kirby, I could not access the link relating to this topic but what I do know is that I did see an email regarding this subject a couple days ago via some Autism group :
(excerpt)
VOTE TO CREATE AN AUTISM REFORM ACT

After you've saved our society from the devastating impact Autism is
making in our World, go vote for other causes to scream your concerns
out to our President Elect.

1. Copy/Paste or click below link:
http://www.change.org/ideas/view/accept_and_sign_the_autism_reform_act_of_2009

However the above link no longer works now and only goes to change.org. I was receiving several updates on the comments there through New Years Eve.. but now nothing.

I always admire your hard work but reading what you have posted tonight has saddened me if true - but then again I was already in tears over Jett: http://drdeborahserani.blogspot.com/2007/06/autism-and-denial.html
(my one twin 5 yr old son "toe walks" like Jett)

Please keep us posted.

[Irishwaterfront]

As others have noted the Autism Blog on Change.org has absolutely no connection with President-elect Obama's Change.gov. Second, Kristina Chew has worked tirelessly on behalf of educational services for Charlie and for kids like him everywhere. She has never accepted judgments that Charlie cannot change, learn and thrive. She is totally committed to seeing him fulfill his great potential which is why she and her family have relocated eight times in ten years in search of better school programs. Kristina believes in proven educational approaches to autism that are arduous, extremely time consuming and effective. In Evidence of Harm Mr. Kirby indicates no appreciation for education of children with autism, preferring instead to advocate potentially dangerous unproven bio-medical approaches. I'll stick with Kristina's approach; in fact I've helped shape Charlie's care and education: I'm his Dad.

[AutismNewsBeat]

Thanks for speaking up, Dad. Kristina is a wonderful choice for Charge.org 's autism blogger.

[bluevalentine]

What unproven biomedical approaches are you referring to? Chelation? It is a medically proven approach for lead poisoning.

[juliaschopick]

David:

I’m a huge fan, and usually find your postings 100% on-target. This time – thankfully – I think you got it wrong.

You scared me when you wrote that bloggers President-Elect Obama’s transition team hired to write their official Autism Blog stated that “recovery from autism is neither possible, nor desirable.­"

I had a gut feeling something was “off,” especially since you wrote (November 18th): Tom Daschle is a “man who has demonstrated an unflinching willingness to question vaccine safety, and to fight for the rights of those people who believe they have been, or may be, seriously injured by certain vaccinatio­ns.”

Since President-Elect Obama has hired Tom Daschle to fix America’s healthcare, things didn’t compute.

I check, and found that three letters -- “GOV” versus “ORG” -- made all the difference. It is CHANGE.ORG -- not the transition team’s CHANGE.GOV – that hired Kristina Chew and Dora Raymaker!

See www.newsweek.com/id/163022 (October 8, 2008):

Change.orgorg is a two-year-old online community dedicated to tackling some of the world's most entrenched problems. . . The site -- which despite being called 'Change,' has no affiliation with either presidential candidate . . . is morphing into a media company that will publish a suite of 13 individual blogs, each dedicated to a specific topic. . . ”

With what we know about President-Elect Obama and Tom Daschle – let's be hopeful that they'll be very open to finding treatments for autism!

Julia Schopick
www.HonestMedicine.com

[autism mom]

Thank you codeman38, I just created a HP account to point out the same thing.

[fightingautism]

As a Palin supporter, I'm stilling holding out hope that all you Obama/autism fighters knew what you were doing. This gives me great sadness so far that we will face 4 more years of the same denial. What was this site thinking?

[sleeplessmom]

I looked at both of the candidates last year and checked out their websites on the autism issue. Never in the entire McCain campaign did he ever have a plan for autism! Obama did, he had one all along.
What were you thinking posting this?
If you are truly fighting autism, start doing your research first!

[Orac]

You mean Palin thinks vaccines cause autism? I had been unware of that.

[AutismNewsBeat]

Sarah Palin is a vaccine expert because she had one once.

[linwessels]

I commend you, sir!! Outstanding! Thank you!!

[codeman38]

Change.org is not the same web site as change.gov, any more than whitehouse.org is the same site as whitehouse.gov.

[StarBaby77]

Dr. Chew has always bothered me a great deal.

As a mother, my first instinct is to protect and fight for our children. Rarely have I seen a mother roll over and give up on her child. It is against Nature to react that way. Apparently, Dr. Chew has more faith in her diagnosis of Genetic Autism than her child. Regressive Autism is treatable. I believe Regressive Autism is Vaccine Injury in disguise.

I am so angry at the Transition Team for even taking a stance on this.. Where will this leave our children if Healthcare is socialized? Will they still be denied treatments and therapies? Will the state's resources continue to be stretched and stressed for ever expanding Special Ed classes.

I want to have Hope with Obama. I don't want to feel like I should have pushed and campaigned for the other team just so our children have an opportunity to have a champion in their corner. With 1 out of 150 children in the USA diagnosed on the Spectrum, they are a majority. They deserve better.

Or maybe we just need to be louder.

[sleeplessmom]

OMG!! When are people going to learn? We have to move forward and seek out recovery for our kids. I seriously hope that the Obama administration does not share the views of them. This is very upsetting to thousands if not millions of parents and family members seeking real help and striving for recovery for our loving children and adults living in hell with autism!

[AutismNewsBeat]

The Obama Administration shares Dr. Chew's respect for real evidence.

[Orac]

At least, so far. We must be ever vigilant that the antivaccine forces do not gain a toehold there. Boosters of "alternative" medicine and all sorts of other unscientific modalities see Obama's desire to reform health care as the "foot in the door" to allow them to change the law to fund dubious medicine of all kinds.