Obama Transition Website: "Recovery from autism is neither possible, nor desirable"

"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

[lightandlove]

(cont'd)
Do I believe that mercury in vaccines is the whole answer to ASD? No. It's also in fish, the air (esp. from coal-fired power plants), and dental amalgam fillings (thus classic, as opposed to regressive, autism). So it's getting into children from various sources. But the link with glutamate is a major piece of this picture. Our kids' brains are being modified by genetic AND environmental factors; and it's past time that we cleaned up our act in this regard. And the work of the so-called Mercury Moms, in initiating research studies, has helped to bring that day closer.

[RobinHMorris]

Redefine the term "blogging" as "purging"!
A plethora of angry repartee surrounds the disease that has attacked our kids. Our children are the ones who suffer when the banter transcends our pain.
My darkest days were suffocating, I tried a myriad of interventions that sometimes failed, I still hoped for cure. I tried not to assign blame.
Quincy Jones produced "We Are the World". Musical legends assembled to sing, a plaque outside the recording studio: "Check Your Egos At the Door".
Rule applies here. Casting anger and blame skews the cause.
Kristina Chew has not denied her child. She has described applied interventions in detail. Basing a blog post on the fallacy that she decided to "withhold autism treatments from her son" is counterproductive.
I do not agree that we should accept. We are obliged to intervene. Children are not science experiments. We try, fail, try again. I believe that if enough is thrown against the wall, something has to stick, my mantra for 21 years of living with autism.
One caveat has always been a benign approach. Would I enforce snake venom ....no. It has been a risk-benefit process. The fact that I would not utilize chelation does not imply that I denounce all therapies.
Recovery is an operative word, signifying different results. Dr. Stanley Greenspan advised me that as long as my child did not plateau it was a sign of progress. It was sound advice.
Recovery vs. progress.... that's a topic for discussion.
RobinHausm­an@gmail.c­om

[Gatogorra]

Wow, a fuster cluck in the comments section. Fun stuff. By the by, even if every other psychiatric or cognitive diagnosis were supplanted, there weren't enough individuals in institutions or in residential homes up to 1987 to cover the number of children per capita that are currently disabled (as in, could never have passed for typical, would never have spontaneously recovered) by autism. The rates of mental disabilities and serious mental illness have also skyrocketed in the past 150 years, though on a different schedule and from sometimes different environmental causes than autism. Institional records and documentation by Social Security (when the program began) aren't that difficult to track. And who knew that doctors in 1930 could coherently document the onset of schizophrenia and differentiate it from birth defects like cleft lip? I thought they lived in mud huts, wore bones in their hair and hunted mammoth back then.

David, a lot of people made the same mistake. It was cleared up for me when Change.org wrote me an email telling me that, though my recommendations for autism bloggers (I didn't recommend myself) were interesting, their organization was different from Barack Obama's Change.gov. What was more confusing was that entire listservs around the web covering many different issues had made the same mistake so it was an easy one to trip over. BFD, as they say. Let's move on.org (heh).

[CraigWilloughby]

Amen and bravo!!

[AutismNewsBeat]

I still confuse John Herd with John Hurt!

[lightandlove]

Sorry about my reply just now to Orac: the link with the study on the autism genes should have ended in 5082, not 5092.

[Irishwaterfront]

Kristina Chew, Charlie and Jim moved until we found the right school program: and find it we did. It seems to me that would be first priority of any family for any child. It's tragic how little discussion is devoted to the educational needs of every autistic child: education is one priority on which we should all agree.

[Evanlia]

hello, did I read correctly that Dr. Chew.. who is a doctor of the classics and not a medical doctor or psychologist, moved 8 times in 10 years in pursuit of the best school district. Plan on her moving even more, as there is not a district out there with the best services. Why doesnt' she stay put and "accept" the district she lives in indefinitely? And she implies that we parents who search for that right mix of biomedical for our kids are wasting their time. Hmm... maybe the cost of moving should be put to some biomedical intervention, then her son may adapt better to any district they choose.

[sleeplessmom]

I agree, acceptance is for better than running around. Good grief, I would think that all of that moving around would not be good for her kiddo, not to mention exhausting.

[joseph449008]

If you think acceptance means "do nothing" you obviously do not understand acceptance. Beyond the fact that moving a lot might not be good for an autistic child, looking for educational opportunities is more than consistent with acceptance.

[JohnDanStone]

Perhaps there is an element of deception in the 'change.org' site title which should not impress the Obama team, if it is jockeying for attention.

[AutismNewsBeat]

Change.org predates Obama's decision to run for President by two years.

[SpectrumDad]

History

"Change.org is a social entrepreneurship venture based in San Francisco, CA. The company was founded by Ben Rattray in the summer of 2005, and with the support of a friend from Stanford, Mark Dimas, and a founding team of Darren Haas, Rajiv Gupta, and Adam Cheyer, Change.org launched the first version of its site in 2007."

http://www.change.org/info/about

Time travel deception?

[hanjo]

When exactly in 2007? Also, when did it ask for autism bloggers? Hmmm

[Orac]

Apparently so.

Damn those Time Lords, coming up with a site well over a year before the election!

[Orac]

Don't be silly.

Change.org predated the Obama Transition Team, and not by a little bit. There is no way it could have foreseen that Barack Obama would win, much less that he would choose to use Change.gov as the address for his transition team's website.

[SpectrumDad]

"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."

This isn't a simple "mistake". You should be taking responsibility for a "complete lack of fact checking" Mr. Kirby. Ready? Fire! Aim!

[AutismNewsBeat]

Some people also confuse Obama with Osama. I guess that makes calling for the President-elect's arrest and trial at least slightly understandable.

[Orac]

Heh.

Well, his middle name *is* Hussein. :-)

[Orac]

Indeed.

It's one thing when Joe Sixpack confuses Change.org and Change.gov. However, when a reporter is so anxious to trash someone (namely Kristina Chew) that he doesn't bother to do even the most rudimentary fact-checking, it says only bad things about that reporter. Confusing the two is a mistake that would not have been made if Mr. Kirby had bothered to take the time to look at Change.org for more than it took him to read Ms. Chew's post that he so despised.

[JohnDanStone]

Autism News Beat

Sorry, I missed the two post about a figure of 370,000. So, if we are talking about a current rate of 1 in 150, though there's lots of evidence it should be higher, the figure should 2 million - if incidence is constant.

[AutismNewsBeat]

Sorry, hard to tell what you mean.

Anti-vaccine activists need to recognize the spectrum of abilities present in PDDs. When Kirby and others like him write that it's hard to miss millions of spinning, flapping adults, they stereotype ASD behaviors, and ignore that most people on the spectrum grow out of behaviors they showed as children. Instead of focusing on the well-traveled 1:150 figure, which is for all ASDs, it's more instructive to look at autistic disorders, which are estimated at 16.8:10,000 ( ~ 1:600).

[JohnDanStone]

Autism News Beat

Ignoring the quip about Neo Con think tanks, that is indeed where you might expect to look, but you have to remember how intractable the disorder is - how would it be mistaken for other sorts of mental disability? To look after severe autism humanely is hugely taxing and expensive. There may be room for some re-diagnosis at the margins, but at the end of the day society has never before had to look after it as a mass problem. In the UK the estimated annual cost of autism rose from >1b pounds sterling in 2001 to 28b pounds sterling in 2007. This was partially spurious because it was based on the idea that autism was just as prevalent in the adult population (according to dogma) but it does give an idea of the scope of problem as it starts to hit the adult population, and where we are going. So odd to think that in an earlier generation no one thought to look.

[JohnDanStone]

I was just looking at this new piece by Kristina Chew:

http://autism.change.org/blog/view/left_behind_on_the_bus

This really makes it quite clear how compromised our children are - how far they are from becoming competent citizens, and how unlike the situation is from anything in the past. According to Kristina, Kev Leitch, Autism News Beat there ought to be hundreds of thousands of autsitic adults who need this level of support. Where are they?

[CraigWilloughby]

"According to Kristina, Kev Leitch, Autism News Beat there ought to be hundreds of thousands of autsitic adults who need this level of support. Where are they?"

Excellent point. Seriously, they need to do the math.

300 million americans. 1 in 96 of them have autism. That's almost 3 million people with autism. Roughly two thirds of them are adults, so that's 2 million autistic adults. That's a lot of people. Where are they? If you go by the current numbers and say that two thirds of that number are PDD-NOS and Aspergers, that leaves 700,000 adults who have autism like my son; many unable to speak, many unable to function in a normal society. Where are they? Did they get better? According to them, Autism of that severity isn't curable or recoverable.

[AutismNewsBeat]

Fombonne (2001) found the prevalence of autistic disorder was 16.8:10,000. According to the US Census Bureau, 3/4 of Americans are over 18 years of age, or 225 million.

The real number is closer to 370,000 adults in the US with autistic disorder.

[AutismNewsBeat]

The number of adults with autistic disorder in the US is closer to 370,000.

[joseph449008]

The prevalence of autism in adults is high; at least as high as that found in children. See this summary of the literature and don't miss the addendums:

http://autismnaturalvariation.blogspot.com/2007/09/high-prevalence-of-autism-in-adults.html

[AutismNewsBeat]

Only one-third of ASDs are labeled autistic disorders. The remainder, for the most part, are Asperger's and PDD-NOS. Prior to 1970, when your autistic adults were born, the DSM didn't list autism as a disorder.

So your question comes down to "where are the hundreds of thousands of cognitively disabled adults"? There is no single answer to this question, but if you want to start counting them, you could start looking in group homes, mental institutions, and neo-conservative think tanks.

[usna73]

I am less concened about the "official" nature of the site, than the broad audience who may equate the two. Clearly, this will present problems for readers.

After reading their latest material on the blog, the authors focus on "available resources." They even see the caes pending in Vaccine Court, as well as the already conceded Poling petiition as threats.
Amazing isn't it? Not to me. Chew and Raymaker are autism groupies, so enamored and preoccupied with their own intellectual pompousity, that they would compromise the legitimate and often desparate attempts by the best intentioned parents to help children.

Let's make it clear. I'm the father of a mercury poisoned child. We have a case pending in the U.S Court of Claims, the current stop on a circuitous route plagued by shills and self-proclaimed experts, cloaking themselves in their own drivel.

We seek one thing only: JUSTICE. Don't tell us about the diversion of resources. My wife and I have devoted our lives to our son and others like him.

I refuse to see "labeling" dictate the outcomes of thousands of families.

Chew is right about the individuality of those with what the DSM crew calls "autism." She needs to wake up about the suitability of possible remedies.

We are all genetically predisposed to disease and death. I'm stunned by the intellectual bent of those who want to hasten it with a poisoned environment. Chew and Raymaker would simply like to make "autism" an industry.

[Orac]

Upon what evidence do you conclude that you have a "mercury-poisoned" child?

[AutismNewsBeat]

A provoked urine test, most likely.

[Fridge-raider]

Let me correct the ladies. Recovery from Asperger syndrome is neither necessary nor desirable, and I can't for the life of me figure out why some people regard it as a disease. Almost invariably, the problems faced by Asperger children are typical of all children or children who have problems that are not necessarily related to Asperger syndrome such as violent, sociopathic peers. Violent, sociopathic peers can be remedied by having said violent, sociopathic peers locked up in little cages where they belong. Introversion, however, is not a disease. It's a personality trait, and it's a socially acceptable one. To a lesser extent, so is being pedantic and dreary, and any problems with these traits can be slowly remedied by having truly caring friends who firmly insist they quit being so pedantic and dreary. Weirdness or eccentricity, in a society that has anything to contribute to the world, can be desirable, though.

Autism is a different animal. Autists actually do have special needs, and their condition, though not curable, is often treatable. In many cases, children who have autism can be taught to live independently and given a chance at bright futures. The most important treatment for an autistic child, though, is for the child's parents to be accepting and loving toward him or her and avoid treating their child as a burden. Autistic children who are treated like they are burdens or failures will invariably fail, for an autistic child's most daunting barrier against social interaction is self-confidence.

[usna73]

Your premise is correct. Your conclusion is based on your "opinion", not fact. You are entitled to the former but not the latter.

As Mr. Kirby points out, familiies with kids who bang their heads against walls or defacate upon themselves or simply too ill to ever function independently, definitely have "burdens."

Burden and failure are mutually exclusive. Our child has never been a "burden" to us, but clearly have burdened us, like those in the society who are so self-absorbed as to judge others who have not walked a mile in their shoes.

What seems ingrained in the Amercan DNA is the need to be self-righteous. Don't be too quick to judge.

[bluevalentine]

Aspergers is a small percentage of autism spec people. Your opinion is great is the majority of AS kids had aspergers....but they do not.
And what kind of DR is Chew?? Does she not realize that there is no such thing as a gentetic epidemic???

[AutismNewsBeat]

How do you define a "small" percentage? Population studies have addressed the prevalence of Asperger's.

[KevLeitch]

How much plainer do people need this to be:

Attention antivaxxers: change.gov (which IS Obama's website) is not the same as change.org (an independently owned website).

Seriously. Get a grip. You look like idiots.

[hanjo]

Gee Kev,

Isn't it interesting how people make mistakes like that? Gee, I wonder why the names are similar? It could not be intentional of course. That could never happen.

[AutismNewsBeat]

And the conspiracy grows wider still.

[Christschool]

Kev,

Since when have anti-vaxxers ever been concerned with facts :-)

[CraigWilloughby]

"Seriously. Get a grip. You look like idiots."

I believe there is an old saying:

"It takes one to know one."

[Orac]

That was a lame comeback, even by your standards.

[joseph449008]

I would think that someone like you, David, would understand why you shouldn't say things like "autism is a nightmare without end."

What if someone said "homosexuality is a nightmare without end?" It's just their opinion, after all, and I'm sure they are not talking about all homosexual persons. And it's not like people don't have these sorts of views; in the past more than today, sure. The doctors who were the last holdouts against gay rights used to say that homosexuality caused a lot of suffering and all they wanted was to help people. Certainly, there were many homosexuals who bought into the medicalization of homosexuality and sought treatment for the "suffering" supposedly caused by homosexuality.

[usna73]

Wrong pal. I am living the nightmare. Never sleeping an entire night in 16 years, changing clothes with excrement in them until age 10,... now to be met with seizures. Opinion, huh?

BTW. Your analogy is so preposterous that you just seem foolish.

[AutismNewsBeat]

But not preposterous enough for you to form a coherent rebuttal. Try again, please.

[AutismNewsBeat]

Why is Joseph's analogy preposterous? Do you also think homosexuality can be cured? With what - prayer? Electro- shock therapy? Chuck Norris movies?

[joseph449008]

You think it's preposterous because you have not studied the history of the criminalization and medicalization of homosexuality, evidently.

If you don't believe there are people who think homosexuality is a nightmare, associated with medical disorders, you need to do some reading:

http://www.massresistance.org/docs/govt08/tran_law_study/part1.html

http://www.catholiceducation.org/articles/homosexuality/ho0075.html

http://www.leaderu.com/orgs/narth/medconsequences.html