What is Turning our Servicemen Violent at Home?
Child Warrior Jimmy

Change.gov v. Change.org and Autism Recovery

Domains 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.gov. 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 basic 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 is 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 – some have girlfriends and boyfriends, teammates and college plans.

But they did not just spontaneously recover - they <em>were</em> 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 (recovered from autism), 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 is author of www.evidenceofharm.com and a contributor to Age of Autism.

Comments

dae

I am a child myself who suffers from aspergers or now what has jettisoned into only slight ammounts of sympthoms that schismed out of the treatment. I don't meet the DSM IV diagnostic criteria anymore but I do still sometimes have marked social difficulties. I don't know if I can fix all of them but I REFUSE to just give up and take it.

there is a persistent desire among many of the aspies I know to just jettison into communitys like aspergia and I find this profoundly disturbing. I know what you're talking about is much more low functioning but there is a difference between me and most of the kids with aspergers that has made this diease from a set back into a nightmare.

I wanted to belong. I just didn't know how.

I don't want to lead merely a productive life, I don't want to just get by, I want to be happy and I dare to dream inspite of all of my problems. I have had my heart broklen in long term relationships several times already and I can tell you I am not afraid to face even more rejection and stumble forward and no matter how bad it gets tomorrow is always a new day.

So thank you. Thank you for realizing it for what it is. it's not a gift, the only thing AS gave me was my intelligence but the price paid for it was always too much and if i had to give that up to get what i wanted i would in a heartbeat.

Jan

Managing Editor's Note: Jan, there are varying degrees of neurodiversity. All of us want acceptance for our children, which is why we work so hard to help them grow and heal and succeed. We can not speak to the more strident ND supporters as this is not an ND blog. Thanks for asking. KIM STAGLIANO

I was part of Dr. Chew's site "Once upon a time, I tried to recover my son from autism" because I had signed up for The Obama-Biden Transition team web site. There are a number of autism blogs on the site written by Dr. Chew and Dora Raymaker. The 10 controversies states their platform. I am very confused by the neurodiversity movement. I think it would be helpful to supply more information. Basically it was about the idea that people are born this way and that we need to save money for long term care, education and employment by not spending it on genetics, vaccines etc.

From my look at the internet the neurodiversity movement (started by autistic people)is a way to stop fixing and rather accepting autistic people. It is spreading to other childhood disorders, and special education. I would really like more information about neurodiversity.

Nicole

You said it! I can't possibly imagine how much harder my family's life would be if we had not done biomedical & behavioral interventions on our son. Just one year of "balls to the wall" (as TACA would say) intervention and my beautiful son is nearly recovered. I thank God every day that there were parents before me to show me the way. I don't care what anyone else decides for their children, but I have absolutely no doubt that I know what is best for mine. His life is better, my life is better, my husband's life is better and his brother's life is better.
Nicole

David Taylor

BACK @ GRACE

Thank you for sharing these insights about the neurodiverse group. I hope everyone reads your arguments and comparisons. Great ammo.

Grace

My 5yo (NT, or maybe ADHD, but having another child on the spectrum helped me to realize this one has immune system issues) was smearing poop all over the house.

Needless to say, I was very upset about it. When I talked to him, all he could really tell me by way of explanation was that it felt good.

So I googled the topic & found all sort of psychological theories & sensory deprivation theories, etc. As his mom who spends time with him 24/7, I was not satisfied with those answers. They did not fit him.

I finally decided to start treating him for yeast (many of you, no doubt, are saying 'duh'!). Sure enough, now that the yeast is clearing up, he has stopped doing it.

It would have been easy to assume that his "It feels good" was referring to the sensation of smearing poop or something, but clearly what he was really saying was that it felt better to scratch that constant itch in his rectum - he just couldn't figure out how to explain it!!! (Especially seeing mom upset about it and not knowing which answer would get him in more or less trouble!)

Now just imagine how we project our own conclusions on these poor non-verbal & verbally challenged kids. I've actually seen some in the neurodiverse crowd defending an autistic's right to bang their head.

My son who is on the spectrum frequently says things in an unusual way that could be easily misunderstood as meaning something other than what he intended. It is only because I know him well enough to seek clarification - if he were in public school, he would assuredly be getting in trouble with students & teachers regularly.

I love my child with autism for who he is - but autism is NOT who he is. It is true that it affects him & is playing a part in shaping who he will be, but that's what environment does. (Similar to Brad Cohen & his Tourette's struggle)

To my mind, it is no different than learning that my child's head aches & doing nothing to try to relieve it - and then suggesting that his headache defines him & we should celebrate it. Tragically misplaced compassion...

Twyla

In her article on this site at http://autism.change.org/blog/view/once_upon_a_time_i_tried_to_recover_my_son_from_autism

Dr. Chew says that "Once upon a time, I tried to recover my son from autism, through educational therapies and biomedical treatments... My son Charlie was diagnosed with autism just around his 2nd birthday in 1999, and I soon found myself reading every possible book and website I could find, and, in particular, every book and website that talked about things I could do now to help Charlie. He didn't talk and he hit his head with his hands and he screamed and back arched when Jim and I tried to get him to stop staring at a certain stone wall..." They spent the first 5 years of her son's life trying every intervention out there, including GFCF diet, DAN! interventions, and intensive ABA.

Then at age 5 "Our focus shifted to the day by days of teaching and being, and listening to Charlie."

So, now that Charlie is done with his intensive early intervention program, nobody else should do intensive early intervention? If they had just "accepted" Charlie when he was little and, for example, allowed him to spend his days spinning the wheels on a truck if that was what he wanted to do, would they now be able to teach him and be with him in the way that she describes?

Certainly a very odd point of view.

Gatogorra

It's been an exhausting year of news (a lot really good, which is even more exhausting) on the autism front. I'm sure we all missed the gov/org discrepancy at first.

What I'd like to know is whether change.org has an autism blogger representing our realm's point of view.

Stagmom

Change.org can say anything they want about autism. They are like About.com or frankly, even ageofautism.com. We each have a point of view. Parents of autistic children no longer believe there is no reason to treat their children - even if they use purely behavioral methods - few would ever agree that treatment is not desireable. For goodness sake, Early Intervention is all about treatment. And more and more therapists know about diet and supplements for autism.

We'll go about our business, helping families get real progress for their kids. Change.org can convince others to call a group home and then take a nap. Not our problem.

We have work to do, friends and readers. Let's not waste time with a vortex.

Kim

Skip

Change.org is not affiliated with president Elect OBama. They will not take ideas from all of the people. They will only bolster their own cause. Their vote for the 10 most popular causes was rigged and changed to only show the results that they support. Change . Org is not a legitamate voice of the people. President elect O’bama’s website is Change.Gov.

Alos there have been complaints of the website setting of trojan virus alarms. Please only use President Elect OBama's website http://change.gov/.

I found out this website because my wife works for the Temecula School System as a teacher for students with Autism.

David Taylor

BACK @ DIANE AND HAROLD:

Diane, I don't know if DSM-V will include autism; was just making a surmise based upon what is happening in the under-reported (by MSM) Vaccine Court hearings, which focus almost exclusively on medical testimony, not psychiatric.

Harold--you are correct. I was trying to give Chew the benefit of the doubt since she doesn't discuss neurodiversity in her bio.

Diane

Daniel -
Thanks for the background. I was unaware of the site.

But then again, I was unaware of anything autism related before July 29th, 2005. Had I been, well....let's just say life would have been different.

Daniel Park

In fairness to Change.org, I don't believe there was any sleazy intention behind the naming of their site. It's been around for some time, and was designed to be a hub for non-profit fundraising and awareness on a variety of social issues. I don't believe they were just trying to get spillover traffic from change.gov. Their WHOIS info indicates that change.org was registered back in 95, and the current owners of the domain have had it for at least a year and a half.

In fact, AoA actually posted their job listing for the autism blogger position a couple of months ago. In an effort to see all interests in the autism community represented (incl. biomedical), I actually threw my own hat into the ring after seeing the listing. I had hoped that the posting's appearance on AoA meant that editors over at Change.org were at least receptive to the idea of biomedical intervention for ASD.

Even though I wasn't selected for the position, I was genuinely excited to see whom they would ultimately engage, as I genuinely like their site and believe in the validity of their mission.

Words can't describe the shock and disgust I felt when reading Ms. Raymaker's "Autism Controversies" post. I immediately fired off a message to Josh Levy, the managing editor of Change.org.

What really gets me is that the blogs of Change.org are supposed to serve as a springboard for raising funds for the various non-profits who represent their cause. Gee, I wonder what organizations are going to get endorsed by the two ladies who now helm their autism blog? Certainly not ARI, Generation Rescue, Safeminds, or any other deserving entity we've come to know that's high on ambition and talent but low on funding. Crying shame...

cheers, d.

Diane

I think that .gov is pretty clearly government related and that .org implies something different all together. I don't think the Obama administration should be using any other dot than gov. However, I think it is a tricky move. Lisa Jo Rudy is saying over on Facebook (yeah, Facebook :-) ) that Kristina Chew had nothing to do with the name of the site and that autism is just one of many topics within. (Which, after looking at the site, is clear.) I am wondering who is behind this site and what kind of connection they have to make change. Anyone know?

Also....David....great letter. I am wondering about the DSM-V and autism not being included. Is that a definite? The implications for health insurance for biomedical treatments are huge if so. Please respond....

Libby

I love my daughter autism and all. But I would give my life for her to be free of autism. She is in so much pain and we can not get proper care for her. Because she can't communicate the extent of her pain the medical community claims there is no problem. Our family is in hell. She hits and kicks us every day. We can no longer go out in public because of her violent outbursts. Children refuse to play with her. I would love for the directors of change.org to look her in the eye and say "recovery is not desirable."

Kelli Ann Davis

You know what amazes me most???

The fact that Obama's Transition Team didn't have the *foresight* to nail down all the "dots": org,com,biz,info,us,net,etc.

I mean, isn't that "101" in the common sense department??? Especially given the status of *who* owns .gov??

Now, they'd probably have to fork over a ton of dough if they wanted to buy the .org site in order to avoid confusion.

Unbelievable.

kat

Thanks David for all you do! And as a previous poster stated the mistake between the two sites was unfortunate.

As for the site.....org

What the hey?

I don't undrestand KC's pov...but I have to give her credit for knowing the struggle vaccine injured families have. I do not, however, understand he belief that there is too much therapy and not enough mommy/child time ( at least that is how I took her). I do not see myself forgetting to "see" my son as I drive to therapy...I see my son, I love my son, and I see my son's life is better for the therapy.
I have stated a thousand times here, that my son is not autistic...but still brain injured. Just a different area of the brain, or a different type of damage...??? But when I started the path of therapy, he had been evaluated at 22 months with a cognitive score of a 4 month old. I've been blessed with his accomplishments once we started INTENSIVE therapy. If there wasn't improvement then I understand quitting the rigors of therapy. But even if the case were that my son did not improve, I would not tell other people not to do it, or imply that they are less of a parent because of it.
Okay,
done,
Kathleen

My post over there has not been approved yet.

Harold L Doherty

David

Why did you say that the Neurodiversity community is represented by only 1 of the 2 bloggers at the Change.org site? Both Ms Raymaker and Dr. Chew endorsed the 10 Neurodiversity Commandments article:

""by Kristina Chew and Dora Raymaker

The Autism Issue" is a topic rife with controversies today. It's hard even to speak of an "autism community," as there are tremendous differences of opinion simply about what autism is and who can speak about it. Dora and Kristina have identified ten topics that have sparked intense and fervent exchanges. We will be addressing additional controversies regularly in the Autism blog.""

Teresa

David,

Your continual fight for our children is always appreciated. This .org crap is such a malicious fraud to what ails my daughter and so many, many others. I hope to see it pulled as it is hurtful and accomplishes nothing. The bizarre and caustic Neurodiverse movement needs to stop harming children.

Christine Heeren

I made the same mistake with the two websites. It's very confusing.

Regardless, I agree that the information on the autism section of Change.org is very offensive to thousands of us.

I have also met recovered children and it's no joke. It's no scam. IT IS REAL! I've witnessed my own son improve greatly with treatments (diet, supplements, chelation, etc).


btw- David Taylor- great letter!!!

David Taylor

David--

Thanks for finding this site. Here is the letter that I wrote to Ben Rattray, the CEO of change.org, and to Joshua Levy, the managing editor.

---

January 3, 2009

Ben Rattray:

In case you haven't heard, your autism blog is swirling around the Internets as a joke. I hope you have been alerted to this.

The autism community is a large, diverse, and well-organized one. The most well organized are the parents, professionals and their organizations that are dedicated to determining the environmental and genetic interactions that bring about versions of a medical condition known by various names and to successfully treating these sick children. Sometimes the umbrella term applied is ASD, or Autistic Spectrum Disorders.

Also "autism" is currently in the DSM-IV; it won't be in V. Autism no more belongs in the DSM than juvenile diabetes does. If no one has alerted you to the ongoing case being tried before Special Masters in the Federal Claims Court in D.C., they should. Autism is being treated as a medical illness in that court, and the successful treatment of thousands of very sick children is being given strong credence by the Special Masters. Some of the preliminary rulings have been clear victories for those who take a bio-medical approach to this disease.

Members of this bio-medical community believe that autism, as a medical illness, can be treated, the its most severe symptoms (lack of speech, gut pain and chronic diarrhea, head banging, violent outbursts, cognitive delays) can be lessened or, in some cases, cured.

The neurodiversity folks, represented by one of your two bloggers, and the parents described above have very different views. The fact that the bio-medical folks have been excluded here will bring great scorn and pressure on you.

The Top 10 Lists provided will do the same. The lists do not include references to the biomedical organizations, including DAN!, whose physicians number in the thousands, and whose patients number in the hundreds of thousands.

I highly recommend some diversity on your autism blog before the rest of your site suffers from the error made here.

Ben, I am very serious. It is going to get very nasty for you. You have already hurt your credibility with the 9/11 Truth deal. If you don't deal with this in a way that restores credibility, you're going to end up looking like another corporate-controlled astro-turf site.

Just a heads up, my friend.

David

---

End of letter

Harold L Doherty

Your honest mistake is unfortunate.

On the question of whether a cure for autism is possible it is preposterous for these two neurodiversity bloggers to claim that no cure is possible. Dr. Chew at least should be well educated enough to know better than to make such an absurd, absolutist statement.

There are many other offensive statements in the first offerings on this new Neurodiverity propaganda site. Apparently Dr. Chew's degree in Greek and Latin classics enables her to forsee the future and know that a cure will never be found. She should tell the many scientists and researchers engaged in seeking a cure for autism that their biological and medical education and experience has deceived them and they should cease wasting their lives in futile endeavors.

Perhaps the professor of Greek and Latin classic literature can also tell this humble small town lawyer what legal, moral and common sense basis she and other strangers have to tell parents what they should think, say and do about THEIR children's autism disorders.

Maybe I lack Dr. Chew's degree in omniscience but I certainly don't see any basis in law, science or common sense for the 10 Neurodiversity commandments proclaimed by Dr. Chew and Ms Raymaker in "10 Autism Controversies",

http://autism.change.org/blog/view/10_autism_controversies .

The menace of ASD adults

"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."

Kristina Chew seems to be on the autism spectrum herself. She seems to be unable to see autism from the point of view of other people and their experiences. I believe this is called "theory of mind."

Their writings should come with a disclaimer "I have autism and I am therefore unable to appreciate anybody else's perspective on things especially autism."

Jessica G

Thank you for posting this, David. I received an e-mail yesterday mentioning the new autism blog and thought as most that it was Obama's site. I was horrified when I read their list of "10 things." They clearly have a strong point of view on autism that most families I have heard from do not share. I know I certainly don't. I feel SO MUCH BETTER knowing that it is indeed not in any way affiliated with the President-Elect. The sick feeling in my stomach for the past 14 hours is gone. Thanks!

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