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.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 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 - some have 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.

Comments

[Olerist]

Son is recovering after changing within hours of his 15 month shots. Detoxing and diet changes is making all the difference. Removing exposure from some of the same cumulating and damaging toxins in those vaccines has made a difference.

Change.org more think tank control-th­e-narrativ­e spin control using otherwise well meaning individuals.

http://www.nytimes.com/2009/01/03/health/research/03smoke.html?_r=1
In this article from the other day doctors are concerned with metals and toxins from "third hand" smoke. Apparently injecting them with some of these same elements/compounds is OK though. The doctors at Boston must not have checked their narrative with the AAP and the media loving vaccine patent holder at the Childrens Hospital in Philly who says children can take such exposures from 10,000 shots at once.

[sleeplessmom]

I wish I would have known about all of the treatments that are available for autism victims, back when my husband and I could afford them. We possibly would be here right now with our son not having to question his wants and having all of the frustration each and every day. I do think that it is only being responsible for insurance companies to cover these services.
I honestly believe that my son would be recovered now. He had the ability to verbalize before vaccinations injured him. He gained some of it years later with the help of a teacher, I consider a hero. When he had to have a different teacher for the past 2 years, he went backwards. I am starting all over again with him by myself by homeschooling him.
Each and every night I dream of hearing him ask to go and play with friends and ask to go with his dad out fishing and snowmobiling. Things I'm sure he would want to do. It will always be heartbreaking for my family and I.

[amandastories]

Thank you Mr. Kirby for continuing to shed light about "autism". Our son has an autism diagnosis. He was developing normally until his DTaP vaccine took away his ability to walk; the MMR a few months later took away his burgeoning speech skills. Some people think autism is cool or different way of thinking. If they have autistic people in their life who are high functioning and healthy, then it may be the same diagnosis as our son's but it's a different condition! Our son has brain damage, mercury poisoning (chelation has helped him), a compromised immune system, and imbalanced gut flora. Maybe we should tell people all that, and not use the word "autistic" anymore.

[KHAAANNN]

Promoting "Victimhood" makes more money than promoting treatment.
If you have "Autism" you are a "Victim" of something, somewhere, as opposed to just being different (what is "Normal" anyway?)
When people speak of "Autism" that is like speaking about "Cancer" it is not just ONE THING like a particular virus or bacterium, it is a VAST range of things from simple "dyslexia" to full-blow "Autism".
It is a range of "syndromes" not an identifiable "disease" that can be "cured". Some things can be treated, some cannot.
My son has ASD (otherwise known as "Aspergers Syndrome"), and a fairly severe case of it, and was mis-diagnosed for YEARS as an ADHD child with personality disorders. While there is an ADHD component to his ASD, that is not the basis of it. Once we FINALLY were able to convince the Doctors and Teachers that pumping him full of stronger and stronger drugs was not the answer, we were lucky to be referred to a wonderful program called the Therapeutic Learning Center that saved his life.
After two years of schooling there, he was able to return to High School and graduate with his class.
He has attended some college and is responding well to treatment and therapy. We have high hopes for him, but are also realists that he will never be "cured". Just better able to cope with the world around him.

[AutismNewsBeat]

Thank you for that wonderful comment. I often wonder how much harder we make it for these kids to cope with their world when we make them believe they are poisoned, damaged, vaccine injured, etc.

[Jane]

I know some parents with an autistic child. They intervened when he was about two, using a training method that was first devised for horses, that rewards the horse every time he pays attention and does the right thing--EVERY TIME. The mother had learned it from her horse trainer. It made sense that this would work for the child, because a horse has a very sensitive flight response and is very alert to stimulus. The parents worked very hard with the child, and after about four years, it was clear that while the child still had heightened responses to all sorts of stimuli, he could connect with his parents and others, and direct his attention outwards. The parents had to maintain their attentions to and training of the child all the time and in every circumstance, but it paid off, at least with that child. I don't think I could have done it with a child of my own. I was very impressed. But when I suggested that the woman talk about it or write about it, she said that the topic of "training" autistic children was too sensitive, and she didn't want to draw attention to herself and her child (whose diagnosis was rescinded by the state). Maybe ALL ideas about autism should be funded.