Showing posts with label Chandler. Show all posts
Showing posts with label Chandler. Show all posts

June 7, 2007

Bob and Suzanne Hurt Another Autism Family

Note: Anyone wanting to send supportive emails to Katie Wright can do so through the National Autism Association at naa@nationalautism.org

So last week they hurt their own daughter, this week they are hurting another autism family.

I don't believe that Autism Speaks are the bad guys. I believe that they are the confused guys.

The world of autism is absolutely no place for the cut throat business tactics of corporate America. We are all struggling on a daily basis and our families tip over easily, so you just don't screw with each other.

I feel for the Wright family right now, I really do. They come from a place of privilege, where only the strong survive, and they really don't understand the struggle that most families are living under. I really believe that they want to serve kids and families, and that they think they are serving them. But you can't screw one or two families for the greater good of "Autism Speaks". You just can't. It shows that your priorities are not in order.

This is a crucial time for them. Things are coming to a head for Bob and Suzanne. They are either going to soften and become teachable, learn from the families that they started AS to serve, and really begin putting their millions to work to actually serve them...

OR

...they are going to become hard to the message that they need to hear, that autism is preventable and treatable, and join their NAAR friends in their descent into irrelevance as people wise up to the party line as more and more kids recover.

I sincerely hope it is the former. I hope so for their sakes, for Katie and Christian's sakes, and for Chandler's sake.

Their struggle to stay blind to the truth that children are regressing into Autism after vaccination and improving under the DAN protocol hurts my son. The longer they hold out, the longer it will take to get Chandler's treatment covered by insurance. The longer it will take for pediatricians to get the message that this treatment is out there and that it works. The longer it will take for the availability of treatment to go up and the costs to come down.

If the corporate model worked for curing Autism, NAAR and CAN would have cured it already. They raised millions every year and did not get one inch closer to a cure. They have not produced one medical intervention for my son.

Almost all of the interventions that are recovering and even curing autistic kids have come out of The Autism Research Institute, which for a long time worked out of Bernie's house and then a storefront strip mall. They didn't give a crap about what anyone thought of them, they certainly have not poured millions into web sites and office space like AS has, they just spent what little money they had on finding direct interventions to help children now. And it worked!!

Imagine what ARI could do with AS's NYC office space budget.

Here is the Wright's new problem. They are jacking the director of "Autism Every Day", who is the mother of an autistic child:


Celebrity Autism Group in Civil War
By Roger Friedman
Fox News

Autism Speaks, the celebrity group founded by former NBC chairman Bob Wright and his wife Suzanne, is in the middle of a family feud and a dispute over whether they have swiped an award-winning film from its director.

The charity is unusual because in a short time it has raised millions of dollars and called upon such celebrity friends of the Wrights like Jerry Seinfeld and Paul Simon.

The Wrights created Autism Speaks just three years ago when their grandson, Christian, was diagnosed with the malady. But since then they have had such a severe falling out with their daughter Katie, Christian's mother, that the Internet is now buzzing with a new scandal.

This week, the Wrights posted a press release on the Autism Speaks Web site in effect disowning daughter Katie's comments in a video interview she gave to a critic of Autism Speaks. Katie Wright also appeared on the "Oprah" show in April, where she talked about the split in philosophies with her parents.

Even the press release issued by the Wrights itself caused a buzz because it initially read: "Katie Wright is not a spokesperson for Autism Speaks. Our daughter's personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. ... Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks." Ouch!

Only later, when the statement seemed too harsh, the Wrights changed the release, adding of Katie: "She is our daughter and we love her very much."

But the damage was done.

With the scandal quickly overtaking the cure of autism as a subject, comes a new dilemma. Filmmaker Lauren Thierry is accusing the Wrights of appropriating her award-winning film "Autism Every Day" for their own purposes. Thierry made the film, which was shown at Sundance this year and is in this month's Nantucket Film Festival, after the Wrights saw an earlier, shorter version they liked.

Thierry says Suzanne Wright then commissioned a feature version, and told her "money is no object." While the Wrights paid all the film's costs, they never came to terms with Thierry, the director says. They systematically cut her out of the promotion of the film, she says, when the Wrights took it on the media rounds.

This was odd considering Thierry and husband Jim Watkins, an anchorman for Channel 11 in New York, have a good PR hook of their own: They are parents of an autistic son.

Thierry wants to be paid for making "Autism Every Day," but when the Wrights sent her a contract, with a blank space for the fee, it also included a proviso that Thierry could not do any publicity for it. Thierry countered by sending a bill for $104,000 including $64,000 for labor and $40,000 for intellectual property. For that amount she was willing to allow the Wrights buy her out. Ironically, Thierry had already told the Wrights she would be splitting her fee with an autism school in New York.

The Wrights countered, through their executive, Alison Singer, that Thierry was paid $30,000 and that they have compensated her in full. But Singer can't produce any evidence of this.

"Alison Singer sent me a check for $30,000. I never cashed it and sent it back. There was never an agreement for a fee," Thierry said.

Singer, who at first told me about paying Thierry, is now playing her cards close to the vest.

"Autism Speaks feels it inappropriate to publicly disclose its details," Singer said.

The chaos surrounding Autism Speaks is not surprising. In short order the new group has shut down or subsumed a number of other, older organizations that used to do the same work, but without the resources of the Wrights. Sources at the long standing Nordoff-Robbins Foundation, for example, have complained recently that their fundraising sources have dried up since Autism Speaks came on the scene.

In her video interview, Katie Wright criticizes not only Autism Speaks but also a group they took over, the National Alliance for Autism Research, for which has organized marches and vigils for 20 years. Katie Wright now believes that vaccinations and the environment may be responsible for autism — a controversial theory among others who say it is a genetic disorder.

Whichever side turns out to be correct, the split in the Wright family cannot be good for the cause of autism.

"The whole reason for Autism Speaks was because of Christian," one critic said. "And now the Wrights are dissing his mother, their own daughter."

Singer says none of that is true.

"The Wrights started Autism Speaks for all families, not just their own," she said.

She agreed, however, that the couple would not have known about autism at all had their own family not become involved in it.

Meanwhile, Thierry says she remains unpaid and that, despite the Wrights' assertions, she is paying her own expenses. When she goes to the Nantucket Film Festival later this month, it's the festival that's picking up her travel and accommodation expenses.


UPDATE:

Lisa Jo at About.com comments.

May 26, 2007

Holy Crap... I Forgot About The Zinc!

We upped Chandlers zinc at the beginning of the week! I forgot about that when I started getting excited about Chandler's huge improvements this week.

So week 4 of the SCD diet his improvements were steeper than weeks 1-3 probably because we upped his zinc.

Yay for zinc!

"March 11"

Scott called this morning to update me on what is up with Chandler.

Scott was making breakfast and thought he would just ask Chandler a random question. He said, "Chandler, do you know what day your birthday is?"

Chandler replied, "March 11".

Until know we had no way of knowing if he even understood the concept of a birthday. We knew he understood birthday parties have cake and they were damn good things, but that is it.

I told Scott to get out the video camera stat and start getting this stuff on record. Hopefully if I have enough time I can cut something together that shows him before and after the SCD diet.

Incidentally I am here hanging with two moms, both of who tried the SCD diet on their kids with little result, and they tried it for six months and one year, so clearly this diet is not a magic bullet for every child, but it seems as if it is another piece of Chandler's puzzle.

UPDATE:

I forgot that we upped Chandler's zinc at the beginning of the week. Check this.

Not Blogging Autism One

So I have been here for two days and I had to make the choice between trying to drinking all the information I could from the fire hose and writing about it. I choose the former.

but...

I will keep you updated on the crazy breakthroughs of my baby boy.

Stay tuned.

May 25, 2007

“Five”.

So I am at Autism One and I am no longer at Autism One.

I am a thousand miles away back in Maine.

Scott just called me and said, “Are you holding on to your pants?” Then he told me the best thing I ever heard ever.

He took Chandler to pick up his older brother from school. Scott was standing the lobby holding Chandler when the guidance counselor walked by. She knows our family and knows that Chandler is autistic and will be coming to school next year, but had not met him yet and did not know the severity of his disability.

She stopped to say hello, and Scott introduce him. She turned to him and said, “Hello Chandler, how old are you?”

Chandler stuck out his hand with all his fingers spread and said, “Five”.

I DIDN’T EVEN KNOW THAT HE KNEW HOW OLD HE WAS!

I am in tears! I am absolutely HIGH right now!

UPDATE:

The hits just keep on coming.

UPDATE:

I forgot that we upped Chandler's zinc at the beginning of the week. Check this.


May 19, 2007

Autistic Inventor At Work Redux

Ladies and Gents, the second patent that Chandler will be applying for will be The Dental Floss Belt.



May 16, 2007

Webster's New Friend Chandler

So after a less than a month on the Specific Carbohydrate Diet the jury is in. It works for Chandler.



He is talking more, his words are more clear, he answers questions more completely and more quickly, he is more present, more affectionate, more interactive and even more willful. (In a good way, usually he will pretty much go where you want him to. Now for example, if I say, "Let's go to the car, we are going to the store," he will protest, "No. I want bike," as he is putting on his bike helmet.)

This morning Chandler gave his big brother a huge hug before he left to get on the bus for school.

After the bus pulled away, Webster turned to his dad and said, "I love that cute little guy. He's so cute. He gave me a hug. That is the second time he gave me a hug. The first time was when he got home from school that day. Do you remember that day, Daddy".

Then he told his dad all about the day that Chandler first hugged him two weeks ago.

Yesterday I took the boys shopping and they had a blast. I had bought them Oballs at a previous store to keep them happy as I dragged them all over town shopping. Chandler decided to play fetch with Webster. He sat in the cart and would throw the ball, and Webster would run to get it and give it back to Chandler. This was high comedy to them and they kept it up for a half an hour (thank goodness the Target was pretty empty), varying the game to include aspects of hide and seek and tug of war.

It was really fun for me to seeing them enjoy each other so much and giggle so furiously for so long. The game only stopped when mommy got annoyed because she was tired and was supposed to be home an hour ago and "Webster please watch where you are going and stop running into the elderly".

There are those who argue that dietary intervention, or any of the biomedical interventions that parents claim work on their autistic children, are merely normal development plus placebo effect. "Desperate" parents want the child to get better so badly that they blow normal gains out of proportion.

The placebo effect does not work on six year old brothers though. Webster does not know interventions we are trying, he only knows that his brother is acting more like a brother.

Hugs don't lie.



April 27, 2007

Chandler Does a New Thing

"Webster"! Chandler yelled as he got out of the car after school today when he saw his brother standing in the doorway.

He ran up the sidewalk and up the stairs and threw his arms around his brother and said, "Gimme a hug", and squeezed and squeezed his big brother, with a huge smile on his face. Finally Web tried to pull Chandler's arms off his neck, but nothin' doin'. When I got there, he put out one arm and said, "Mommy"! So I bent down and he hugged both of us around the neck, smashing all three of our heads together.

He was the one in charge of that hug and I could barely keep my balance.

You would have thought his brother had just come back from war by the greeting he gave him, but it had only been four hours since they had seen each other.

Chandler has never been that excited to see anyone. Ever.

We started him on the SCD diet last week and he has had lots of prayer this week from lots of people that it would help him out. He has been a bit more verbal this week, but the thing that has been the most dramatic is just how affectionate and attentive he has been to us.

I don't remember anything in the research that says that it would turn kids into love machines. Perhaps a study should be done.

January 29, 2007

Say Goodbye to Hollywood


So we decided to that LA was not the best place in the world to raise our little ones, so we packed up the car and moved the family to a super cute little town in Maine.

Check out the view from the boys room.




Chandler is diggin' the snow.


November 20, 2006

Escape From LA

So we have decided to say goodbye to Hollywood and head back east. Raising Chandler in Los Angeles was not the best, so we are moving to a quiet little town in Maine. We are in the process of slowly making our way, taking the old school trip across the country.

Unfortunately my computer was stolen during the packing up and I have lost TONS of information. Among the losses were a good portion of my email and addresses. So if you have written to me, and I have not written back, I won't be answering you. If we have corresponded at all, please drop me an email and remind me of anything that I may have outstanding to you. That way I will also have your information again.

I will be checking in from the road periodically over the next month and get to do much more writing once we settle in.

Eastward Ho!

November 1, 2006

Watch for Falling Children

I have a herniated disk in my neck that is pinching off the nerves in my right arm.

Here is why:


My boy enjoys launching his body 45 lb. at people, but just assumees they know that he is coming and will catch him. Even if you are looking the other way. Or have your hands full of stuff, like a camera.

Has anyone done a study of ASD parents to see just how many serious physical assults they have suffered or to see if wearing some sort of protective hockey gear or body armor might help?

October 17, 2005

Chandler Just Asked for a Hug

I had a crappy morning, dragging both boys through the rain to try to get stuff done and nothing was working and the boys were whining. I didn't buy them a treat at the store and Chandler cried from the check out line until 10 minutes after we got home. By then we were all miserable, and I was soaked and frustrated and close to loosing it. One of those sucky mornings when you just want to go back to bed.

I threw lunch at the boys and put the tv on so they would leave me alone for a minute and I could collect my self.

After about 15 minutes, Chandler came over to me and grabbed my hand, looking no where in particular, saying 'i wanna... i wanna..." I was annoyed because I just wanted to finish eating lunch before I had to get up.

He was pulling on both my hands, so I assumed he wanted me to get up do something for him. I didn't because I just didn't wanna. I asked him directly, "What do you want Chandler".

Then he surprised me by answering, "hug".

I have never heard that word out of him before, and didn't think I heard him right until he took my hands and put them behind his back and put his arms around me. I gave him a big hug, but at that point I still was not sure that he was really asking for or giving me a hug, because it was just so out of place.

I expected him to then pull me up to get him something, or ask for something else. But when he was done hugging me he ran off and played.

It was so perfectly timed and I needed it so much, but even writing this, I have a hard time trusting that it really happened the way I think it did, which just depresses me more, because why should I not just be able to enjoy the first time my son sought me out just because he wanted a hug from me and nothing more?

August 31, 2005

Chandler Just Asked His First Question!

We have been chelating Chandler since last fall, taking some big breaks in between rounds. We have not been chelating him this summer. We took a long break to switch doctors, give his body a rest, make sure all his essential minerals were replenished, do a bunch of testing and we will go it again when school starts in two weeks.

We did a DMSA challenge to reassess his lead and mercury levels, and in the last few days, he has made a big jump forward. You would think that I would not be surprised any more when he makes gains on chelation, but I guess I read so much that ‘it is not proven effective’, that I begin to doubt what I have seen in the past year.

In the few days following the 300mg dose we gave him for the urine test he has made some really good changes. He is just ‘more there’. It is hard to describe unless you know him well, but I will try.

First, in the last few days he has spent a lot more time with me. I was cooking for an hour and he spent the whole time sitting across the kitchen counter from me, playing with spoons and watching me. He also gets really upset when ever I leave and he can’t come.

He has started playing with the cats. Until now they have been invisible to him.

He has been asking for things like usual, but not like usual. He has added a few more four word sentences “I want light on”, but the most remarkable thing is that when he tells me what he wants, he is looking into my eyes expectantly for an answer. Before it was just, submit request “I want hot dog”, walk to kitchen, receive requested. Now he asks me for something, then just hangs there with this ‘please, please’ look on his face and waits for me to respond.

So this was the coolest thing. Today Sara Jane was over and all three kids were in the back yard. Chandler asked to swing (his favorite) and I said OK and the two of us walked toward the swing. When Web and SJ saw that Chandler was going there, as children do, they suddenly thought the swing was the coolest thing in the yard and everyone was fighting over it. So I closed the swing for business and directed them to the kiddie pool.

About 15 minutes later, Chandler came back up to me and said, “I want swing.” I said, “sorry baby, no swing” and waited for him to throw himself on the ground crying. He didn’t.

Instead he looked back up at me, cocked his head to the side and said, “I want slide?”

That was “I want slide?” with his voice going up at the end of the sentence, on the word ‘slide’, as people do when they ask a question!!!!

He was, in his heart, asking me, “Well, if I can’t go on the swing, can I go on the slide?”

We have never ‘taught’ intonation, he just picked it up by listening.

It was a great reminder of how well he does on chelation. If this is the improvement after one dose, I can’t wait to see what he starts doing this fall.

Say a little prayer for me that his next sentence is, “I wanna go potty”.

July 30, 2005

File under: Things That Call For A CDC Study

The following is an article on Chelation that was brought to my attention by Skeptico and I thought that it was a great article to address as a parent who is currently chelating their child.

Chelation & Autism
Jul 27, 10:41 AM
by James R. Laidler, M.D.

Can chelation help autism?

Chelation is a legitimate medical therapy for disorders caused by an excess of certain metals. Copper, iron, mercury, arsenic and lead are all metals that can cause toxicity disorders that are successfully treated by chelation. Since about 1985, when the idea that autism might be caused by mercury poisoning first arose, many practitioners and groups have promoted chelation as a treatment for autism.

Clearly, the first question that must be settled is whether autism is caused by mercury (or other metal) toxicity—if it is not, then there is no point in treating it with chelation. Unfortunately, this question has become one of many “hot topics” in autism, with much heat and emotion obscuring the scientific data. The first step, then, is to look past the emotion and political maneuvering and examine the data.

When it was first proposed, the idea that autism might be due to mercury poisoning showed a good deal of promise. After all, mercury is a well-known neurotoxin and, additionally, was used as a preservative (thimerosal) in the vaccines children received. With a degree of biological plausibility and a known exposure, the next step was to look for epidemiological data.


One of the problems that complicates the search for the causes and cures of autism is the assumption that it is a single disorder and that all cases are caused by the same thing. This is in contrast to a disease like AIDS in which all cases are brought on by the HIV virus.

What is diagnosed as ‘Autism’ is actually likely to be more than one physical syndrome. Because Autism is a DSM diagnosis and based solely on behavioral criteria, the diagnosis does not address the different sets of physical anomaly clusters that researchers are finding when they look at the biology of ‘autistic’ patients.

One research group has recently made a distinction between two types of autistic profiles. One, labeled complex autism and occurring in about 30% of autism cases, presents with smaller head size, greater chance of low IQ, lower rate of siblings with the disorder and seems to have close to a 1:1 ratio of occurrence between boys and girls.

The other, essential autism, presents with larger head size, few structural brain abnormalities and has a ratio of 7:1 boys to girls.

This is a huge confounder to any epidemiological study, even a well designed one, that looks at all cases of diagnosed autism with out differentiating between groups with different phenotypes.

In discussing research into the causes of autism (in this case the genetic cause), one of the researchers commented, “…Studies haven’t found anything because they’re looking at a big heterogeneous group — a mishmash of people with different etiologies,” Takahashi said.”

One could postulate that only the larger head size group displays autistic symptoms because of mercury poisoning, as mercury toxicity does not always present with impaired IQ; and because in vitro thimerosal toxicity studies preformed at the University of Kentucky showed that estrogen has a protective effect against, and testosterone exacerbates the damage of, ethlymercury as a neurotoxin.

In light of this new information it seems that a better question than, “is autism is caused by mercury toxicity” which is the question largely being asked in these epidemiological studies, would be, “are cases of mercury toxicity being misdiagnosed as autism”.

The answer to that question cannot be found in a large epidemiological study.

The authors of the the final IOM report on the thimerosal/autism relationship in 2004 stated themselves that the epidemiological research it was relying on to clear thimerosal as a cause of autism would not pick up on a sub-set of the population that was genetically vulnerable to mercury poisoning.

If that is the case, then how much more so to these studies fail to give us meaningful data if the children who may be mercury poisoned are members of two different subsets being confused with one another?

Unfortunately, well-designed studies take a while to complete and publish.


Well designed studies do take time to complete and publish.

This is further delayed that by the fact that health authorities are neither attempting to complete or publish them. Despite years of parents requests, the public health authorities have not yet begun to design, fund or even discuss studying the effects of thimerosal on developing children, nor the safety and effectiveness of chelation on autistic patients.

[Update: I have heard that there are 2 government funded studies getting underway on the effects of thimerosal. I will try to find them and confirm exactly what they are. Still no govenment funded chelation/autism studies.]

Thimerosal was invented in the 1920’s and it’s only safety test was carried out in 1930 on 22 patients with terminal meningococcal meningitis. Patients were followed for several days until their deaths. No long term health problems were noted in the study because the patients had no long term health.

When the FDA was created, thimerosal was grandfathered in and has never been safety tested it to this day despite the fact that it has been implicated in toxic illness every few years going back to 1947.

I will be repeating this point through out my critique of this paper.

This delay left an information vacuum that a number of people immediately began to fill with assertions that autism definitely was or certainly was not caused by the thimerosal in vaccines. This did not make any progress toward settling the question, but instead polarized the issue before the arrival of any real data.

Lurking in the background, undetected in the tumult, were data that could have pointed the way. At least two countries—Canada and Denmark—had removed thimerosal from their vaccines in the 1990’s (Canada 1994, Denmark 1992) and yet had both experienced rises in autism prevalence similar to those in the US and UK.


The findings in the Denmark study have come under serious criticism. When the data of study was reviewed, it was found that the sampling presented fatal flaws. The low incidence of autism during the use of thimerosal can be attributed to the fact that the database that was used only tracked inpatient cases of autism at the time. At the point in time where thimerosal was removed, the database was expanded to include cases that were diagnosed at a large clinic outside of Copenhagen where 20% of the countries autistic patents were diagnosed. At the point in time where thimerosal was no longer used, but the cases of autism seem to have skyrocketed, the database had expanded further to include all cases of autism, inpatient and outpatient, in the country.

The study is further compromised by the fact that several of the coauthors were employed by the Statens Serums Institut, the government owned vaccine manufacturer who would be held liable if it was indeed found that the use of thimerosal in vaccines contributed to autism.

[Update: Kristjan has pointed out here that the Danish health care system and liability laws are different from ours and no such legal liability exists for the Statens Serums Institut. I still wonder what might motivate these researchers to stand buy this study and not protest its poor use. More on that in the comments here, here and here.]

Finally, even if the study were reliable, applying it to the U.S. population as the IOM has done presents problems. Children in Denmark were administered less than half the amount of thimerosal of US children and it was given over a longer period of time.

Further, American children are subject to an autism rate at least 10 times that of Denmark. It seems to me to be like doing a study of Sickle Cell Anemia in Denmark and applying it to the population of Baltimore. Clearly children here have some other intervening factor that increases the threat, be it genetic, environmental or even the thimerosal dosage.

As for Canada, I have seen this mentioned in several places, but I have never seen the actual study. If you have it or know where I can find it, can you please email me so I can look at it? Thanks in advance.

Update: Shannon from British Columbia reports that there is no Canada study or even any Canada data to be studied. She reports that they don't keep track of autism rates and don't offer services. She also reports that thimerosal removal from vaccines was left up to the provinces and that many are still on the shelves. See her comment in the section below for a more detailed explanation.

Additionally, while the childhood vaccines in the US included three (DTP, HiB, HepB) with thimerosal, in the UK, for the past two decades, only the DTP vaccine contained thimerosal. This meant that, despite having a constant thimerosal exposure for nearly twenty years, children in the UK experienced the same rise in autism prevalence.

In 2003, the first study, from Denmark, showed that the prevalence of autism in that country had risen steeply even though thimerosal had been removed from vaccines in the early 1990’s. This study was greeted by howls of outrage from some that advocated the connection between thimerosal/mercury and autism—the authors were roundly disparaged and their integrity and objectivity were impugned. This did not change the fact that the autism prevalence in Denmark has continued to rise, following the same pattern as autism in the US and the UK.

In September 2004, a study from the UK showed no association between thimerosal exposure and autism . At the same time, a review of ten epidemiological studies of autism and thimerosal found that the few studies that found an association between thimerosal exposure and autism had serious methodological flaws. Chief among these flaws was using the Vaccine Adverse Event Reporting System (VAERS) as a source of data.

The chief problem with the VAERS data is that reports can be entered by anyone and are not routinely verified. To demonstrate this, a few years ago I entered a report that an influenza vaccine had turned me into The Hulk. The report was accepted and entered into the database.

Because the reported adverse event was so… unusual, a representative of VAERS contacted me. After a discussion of the VAERS database and its limitations, they asked for my permission to delete the record, which I granted. If I had not agreed, the record would be there still, showing that any claim can become part of the database, no matter how outrageous or improbable.

Since at least 1998 (and possibly earlier), a number of autism advocacy groups have, with all the best intentions, encouraged people to report their autistic children—or autistic children of relatives and friends—to VAERS as injuries from thimerosal-containing vaccines. This has irrevocably tainted the VAERS database with duplicate and spurious reports.


I think that it is clear that the VAERS is a poor source for such studies. The CDC’s Vaccine Safety Datalink is a much better source, but the CDC has blocked it from being reviewed by independent researches despite the fact that congress has directed it to do so and claims that disallowing such access is a violation of federal law. The one team granted access in 2003 was severely limited in what they could do and thus their research effort, although it found a dramatic link, was completely tainted by the process and seems to me somewhat of a false start.

The CDC claims that they welcome research applications, but at last check they had not accepted any.

Testing for mercury

What, then, about the parents who have tested their children and found their mercury levels high? These children may have a legitimate problem with mercury poisoning…if the testing is valid. While laboratory accuracy—and cost—is an issue with many of the “mail-order” labs, a more serious problem is the manner in which the specimen is collected.


Dr. Laidler seems to be saying that contamination during collection and overnight shipping can skew results, but I don’t feel that he has properly addressed the possible process by which mercury would begin to appear in urine samples that had none at the time of excretion.

Many practitioners who advocate chelation routinely use “provoked” or “stimulated” excretion studies. To do this, they administer a dose of a chelating agent (more about them later) and test the urine a few hours later. This practice will routinely and predictably elevate the urine mercury level to several times the “unprovoked” or “unstimulated” level.


What is not mentioned in this discussion of “provoked” excretion studies, is the context in which the study becomes valuable. The working theory in this case is that some autistic children are actually members of a sub-set with a genetic impairment to excrete heavy metals such as mercury. Straight forward blood, urine and hair tests for mercury that would identify mercury toxicity in typical subjects who have been victims of a large mercury exposure would be useless in identifying mercury toxicity in people who have no ability to excrete mercury.

In order to find out if these types of subjects have mercury in their tissue, it must be stimulated. If it is excreted in the urine after the introduction of a chelating agent, then it was present in the body tissue.

Since the normal values listed on the laboratory report are for “unprovoked” specimens, the results will be much higher than normal and can appear alarming.


“Normal values” seem to mean little in these results. When mercury is excreted during a DMSA challenge, it cannot be taken as a true measure of how much mercury is in the tissues. Like clowns coming out of a car, you don’t know how much is in the body until you count all of it when it comes out.

Several factors complicate a getting a true picture of how much is in the body, one being that DMSA binds to lead more readily than to mercury, so if lead is present, the mercury level may be artificially depressed.

Doctors have reported patients excreting up to three and four hundred times the mercury that the baseline showed on the initial challenge.

The only thing that can be said with much certainty is that if you give a chelating agent, and mercury comes out, then it was in there and treatment should continue until it stops being excreted.

The cost of many of the mail-order labs is also a significant concern. A brief survey of some of the bigger mail-order labs revealed that they charge between $175 and $300 for a “panel” of urine metal tests, including mercury. The local hospital lab charges $35 for a urine mercury test.


Being a parent that has paid $300 for such urine metal tests, I am all for lowering the price. However, if I woulda known then what I know now, that the first time I did such a test on my son I would find mercury and lead, and that the chelation we have done as a result would help my son make the progress that he has made, I would happily sign my car over to the lab that delivered me these results.

But that's just me.

[scarcasm alert]I believe a good way to lower the costs of the test in this free market, would be many labs offering this standardized test, and doctors regularly screening children with ASD, ADHD, verbal and developmental delays, and those who have exhibited symptoms of vaccine injury after thimerosal containing vaccines, for mercury poisoning. That might be something that the government could look into.

[Update 2007 - the free market prevails. My son's last urine toxic metals test this month cost $65]

In most cases, the other metals included in the “panel” or of little or no use—there is no research or clinical data that connects some of these other metals to any disorder whatsoever.


I need more information from Dr. Laidler on this point. Does “no clinical data” mean that studies have been done and no connection has been found, or that no studies have been done?

Another questionable practice is the use of fecal mercury levels. The mercury in feces is a combination of ingested mercury (minus the amount that was absorbed) and any mercury excreted into the feces (usually in the bile)—there is no way to truly know how much mercury is being excreted without knowing the amount ingested and the amount absorbed. One thing that is certain, however, is that the fecal mercury level will be higher than the actual amount of excreted mercury, because of the mercury in the food we eat, the water we drink and the air we breathe.


I don’t know any families who have relied on fecal mercury levels in order to make a decision on whether or not to chelate, nor have I read of doctors relying on them. It seems an inaccurate measure of mercury toxicity for all the reasons you mention. Can anyone point me towards a source that recommends relying on it so I can further look into this?

[Update 2007: I have not heard of fecal mercury levels being used in the two years since this was written.]

This brings us (at long last) to chelation.

Chelation—what it is and how it works

Chelation works by using a compound has a stronger attraction (affinity) for mercury than the tissues of the body. Since mercury has a very strong affinity for sulfur, all the effective mercury-chelating agents contain sulfur. This does not mean that any sulfur-containing molecule can act as a chelator, since body tissues also have sulfur-containing components, which are what the mercury binds to. An effective chelator needs to have a higher affinity than body tissues.

This simple fact eliminates some of the compounds that are being touted as chelating agents for mercury. Glutathione, for instance, which has a sulfur-containing amino acid, is not sufficiently greater in its affinity for mercury than the body tissues to be an effective chelator.


The role that glutathione may play in autism is still emerging. Just a few months ago a study was released that found that 80% of autistic test subjects had some degree of glutathione depletion. After reading this I began supplementing over the counter oral l-glutathione and his speech began to progress more rapidly. He went from taking several minutes to put together a simple three word sentence, to spontaneous three and four word sentences in the matter of two months, and a week ago he began pointing things out to me (with his finger), saying, “look, look. Rain”.

I am genuinely interested to know specifics about exactly what it is doing and why such a weak chelator would be so helpful to him. I am looking forward to the question being studied further by federal health authorities.

Another widely used chelating agent, EDTA, not only has little affinity for mercury, but is also not absorbed when taken orally—it must be given intravenously.


There is now a product call Detoxamin that is EDTA in suppository form. Is this well absorbed form? Just curious.

The two agents that are most effective for chelating mercury are 2,3-dimercaptosuccinic acid (DMSA) and 2,3-dimercaptopropane-1-sulfonate (DMPS)
. DMSA has been widely used in the US—primarily for lead poisoning—and has a good safety record.


I am grateful to Dr. Laidler for pointing out that DMSA has a good safety record and is the standard treatment for lead poisoning. I have read many poorly researched reports that claim that all chelation is dangerous and it is quite frustrating.

DMPS has a long history of use in the Soviet Union, but has more toxicity problems. DMPS is popular with some practitioners because it causes a very large rise in mercury excretion, primarily by prompt clearance of kidney mercury stores, making it very useful for “provoked” mercury testing.

DMPS is not approved by the USFDA for any purpose, primarily because it offers no medical advantages over DMSA and is more toxic. Both can be given by mouth, but only DMPS is available in an intravenous form. Given that there is little or no difference in their effectiveness, a practitioner who wants to use DMPS should be viewed with suspicion.


In my experience, this is becoming more generally agreed upon in the autism community, although there are some doctors that have used EDTA and DMPS. I think that the trend seems to be coming back around to the use of DMSA.

The sulfur-containing groups in DMSA (there are two) are mercaptans, relatives of the odorant that is put in natural gas to make it smell bad. In short, it stinks. This can be a problem not only for the child who has to take it, but also for the entire family, as urine that contains DMSA will also have a foul, sulfurous smell. While some manufacturers claim to have overcome the smell “issue”, if the urine doesn’t smell foul, there is no DMSA being excreted and, therefore, no chelation happening.


While it is true that a sulfur odor does present itself, it has never occurred to me that it was a ‘problem’ or even something that a parent might take into account when deciding whether or not to chelate a child with mercury poisoning. Changing diapers more often or airing out the bathroom is little price to pay for a chance to get back your healthy, thriving child.

I did read about one family whose son carried an incredibly strong, unpleasant odor at all times during the first 6 weeks of his chelation. They lived with all the windows open and joked about all the stinky toxins that he was shedding.

They seemed really happy to have his odor problem replace their little boy’s autistic symptoms.

One preparation that deserves comment is transdermal DMSA (or DMPS)—a cream or ointment that is rubbed onto the skin, presumably to chelate mercury. Both DMSA and DMPS are highly water-soluble and do not dissolve well in fat or oil, which means that they most likely won’t be absorbed through intact skin. It is interesting to note that none of the individuals or corporations selling this preparation has—to my knowledge—performed the simple test necessary to prove that it is absorbed. In the absence of this simple bit of data, it must be assumed that it is not absorbed.

Lipoic acid—a sulfur-containing fatty acid—has also been touted as a chelating agent, although its effectiveness has not been well studied. It has the advantage of being considered a “natural” substance, but the few studies that have examined it have found it less effective than DMSA . It is fat-soluble and can potentially cross the skin, but this has not been tested. Its fat-solubility may (or may not) allow it to penetrate the brain tissue better, but this has also not been demonstrated.


Many doctors use this in conjunction with or following DMSA chelation because of its presumed ability to better penetrate into the brain. We have found adding ALA to our son’s chelation accelerated his progress.

Dr. Laidler again notes that ALA has not been tested. I would like to note that parents have been requesting chelation studies be conducted or funded by the national health authorities to no avail.

[Update 2007: We used ALA for a time with Chandler, but it seemed to feed the yeast in his gut and lead to hyperactivity so we did not use it for long. It has fallen out of favor with most DAN docs for this reason.]

A number of naturopathic remedies claim to remove mercury and heavy metals, but this claim is often based on the parent plant’s ability to remove mercury from the environment. As a result, these naturopathic remedies may themselves have a high degree of mercury contamination. At any rate, none of the naturopathic “chelating agents” have been tested to support their claims. In the final evaluation, only DMSA offers the combination of safety and effectiveness that would warrant its use. DMPS is a close second, limited only by higher toxicity.

Safety of chelation

Common less serious side effects of DMSA include nausea, vomiting and diarrhea. Skin rashes have also been reported—these are often erroneously referred to as “mercury rashes” and attributed to the removal of mercury. Regrettably, the same rashes are seen in people who have no mercury toxicity and are merely due to a drug reaction. A rare and unpredictable reaction (and potentially lethal, if not treated promptly) is Stevens-Johnson Syndrome, a severe drug reaction that presents with lesions on the skin and in the mouth and gastrointestinal tract.


My son, like many autistic children with intestinal yeast, can have an increase in hyperactivity while on oral DMSA, so rounds of chelation are spaced out so that a healthy gut can be maintained. Such breaks in chelation also allow for mineral supplementation to assure that the body is not stripped of necessary nutrients during chelation.

No significant adverse drug interactions have been reported with DMSA, but most of the children who received DMSA for lead poisoning were not taking other medications—and most of this experience predates many of the medications used
for autism. Increased zinc and copper excretion has been noticed in animal studies, but this is apparently easily corrected by moderate zinc supplementation. Copper supplementation is generally not needed.

The more serious side effects of DMSA are primarily bone marrow suppression and liver injury. In the thousands of children who received DMSA for lead poisoning, somewhere between 1% and 3% developed either elevated liver enzymes (a sign of liver cell injury), low white blood cell and/or platelet counts (a sign of bone marrow suppression) or both. In all cases, these abnormalities resolved after DMSA was stopped. However, these children were being monitored with frequent blood tests and received treatment for less than three months.

There is a danger that long-term use of DMSA without close monitoring could lead to irreversible bone marrow or liver damage. This has not yet been reported, but is a compelling reason to limit the duration of DMSA therapy and to have blood tests done every one to three months. The safety of DMSA—taken for less than six months—is well-established, but this safety has not been demonstrated over the long-term.


DMSA is available only by prescription and should only be administered under a doctor’s care for just such reasons. Unfortunately, so few doctors are treating autistic patients, for what is ultimately a medical disorder, there are just not enough good doctors to go around.

[UPDATE: Apparently you can get DMSA with out a perscription, which seems odd to me. IMO it should be only used under a doctors care.]

Also... long term studies of chelation should be undertaken by the CDC... but you knew I was going to say that.

Finally, there are as many dosing schedules for DMSA as there are practitioners who make claims about it. As perhaps a ridiculous extreme, one practitioner has asserted that DMSA must be given every two to three hours around the clock! This person also insists that failure to follow this schedule will result in more mercury being deposited in the brain. Fortunately, this is absolutely wrong! Doses as infrequent as once a week have been effective at removing mercury and lead, although at a much slower rate than the recommended dosing schedule of three times a day.


Until the mercury/autism connection is properly studied and the results are treated with honesty and transparency, chelation for children diagnosed with autism will remain to be part science, part guesswork. Yet another reason that the health authorities should do its due diligence and investigate chelation as a treatment for autism related mercury poisoning.

Summary:

[1] Is autism due to mercury?

There is no convincing data supporting a link between mercury or thimerosal and autism. This is not to say that mercury and thimerosal cannot cause autism, just that there is no data to support the connection.


To say that there is "no data to support the connection" is not correct. There is a great deal of data, but the data is not conclusive. It consists of in vetro studies, primate and rodent studies, case studies and small population studies.

Many authors and investigators can still make the point, as Dr. Laidler does, that there is “no convincing data” because the health authorities charged with funding and disseminating such studies (on the scale that people are 'convinced' by) are not doing their job.

Chelation remains one of the most promising medical treatments for what is commonly diagnosed as ‘autism’, yet the government chooses to spend money instead on long term genetic research that will be of no benefit to children who were diagnosed with autism today.

The first large scale research project into chelation for those with autism is just getting underway at the University of Arizona. It is being funded by anonymous private donors.

[2] Mercury testing.

Mercury testing, especially if done with a mail-order lab, can be both misleading and overly expensive. If you truly suspect mercury poisoning, spend $35 for a urine mercury test at your local clinic or hospital—don’t spend up to $300 to get information of questionable accuracy and minimal utility.


I don't think that Dr. Laidler has made his case that the information you get for your $300 is "of questionable accuracy and minimal utility". It was mighty accurate and useful to us.

[3] Chelating agents.

Many of the remedies promoted to remove mercury and other heavy metals are either not effective, not safe or both. Of the available chelating agents for mercury, DMSA offers the best safety and the best effectiveness.

[4] Safety.

Despite its impressive safety record, DMSA is not without side effects. Long-term treatment with DMSA has not been studied (insert comment about how the government should study this-ed) and may result in serious problems. Close medical monitoring is strongly recommended if you decide to use
DMSA therapy on your child.

* * *

Comments
1. Is it not also true that even in the legitimate use of chelation for lead poisoning, there is no expectation of reversing whatever neurological damage has already occurred? I would think this would be another strike against the credibility of chelation for autism.
— Lisa Randall Jul 27, 03:37 PM


It is true that there are no guarantees that getting the mercury out of your child will cure their autistic symptoms, just as there is no guarantee that chemotherapy will cure cancer. Most parents faced with either situation are likely to give their child the chance at recovery even if the odds are not 100%. I do know of two children who did not respond to chelation therapy. Neither child was harmed by it and neither of their mothers regret trying it.

We have no guarantee that tomorrow, the last drop of Hg won't tumble out of our boy and his wonderful progress will come to an end. If it does, we will make yet another one of those course corrections that parents of special kids have to make. But at least we will know that we got him as healthy as we could.

2. The studies that have looked at removal of lead by chelation (that Autism Diva has looked at on pubmed) showed no improvement in IQ or behavior, (or both?)

Brain damage in general is not seen as reversible.


This makes logical sense. But this has not been my experience.

My son called me mommy until he regressed at 18 months in the fall of 2003. In June of 2004 I gave him 300mg of DMSA for his chelation challenge to see if he had mercury toxicity. He was given the dose around 8am and about 6 hours later he called me ‘Mommy’ for the first time in almost a year.

I was in my bedroom cleaning, and he came in and started pulling on my hand. I was trying to finish my task before I went with him to see what he wanted, so I was looking away from him. I thought I heard him say ‘mommy’ so I looked down, and instead of pulling my hand toward the door and looking toward where he wanted me to go, he was looking at my face and called me ‘Mommy’ three more times. I was completely stunned.

At that point I expected that his tests would come back positive for mercury, and they did. There was no question after that whether or not we would try chelation on him.

To respond to Autism Diva’s very good point, I no idea as to why DMSA would have an effect like this if his mercury has caused brain damage. It makes no sense that my son would improve that drastically in 6 hours.

I would REALLY like the federal government to clear this up for Autism Diva and me. They could... oh I don't know... do a study or something?

Some of the autism/mercury parents think their kids got toxified while in the womb from a rhogam shot that had thimerosal in it.

There’s no evidence for that...


Again I must repeat my mantra. There is no evidence that Rhogam plays a role in the development of autism because it has never been studied.

A year ago Lyn Redwood, the head of Safe Minds, was invited personally by Dr. Julie Gerberding, head of the CDC, to submit a wish list of research proposals to her. Among the requested research was a study to see if Rhogam could be involved with the development of autism. I spoke with Lyn last week and she said that neither the CDC nor Dr. Gerberding has never responded to the list that they asked be submitted to them.

I am a Rhogam mom and was surprised that this had not been looked at yet. I am waiting for the CDC and the FDA to go ahead and do this very necessary safety study on an injection that that they have already approved on pregnant women.

but besides that, they think that they can chelate the kid NOW and affect proposed damage do when the brain was developing? They obviously have no clue about brain development and probably have never looked into Fetal Alchohol Syndrome. There’s nothing that undoes that, but the kid can learn to use what he has to the best possible extent.
— Autism Diva Jul 27, 03:46 PM


Autism Diva will get no argument from me (except for the part where she suggests that as the parent of an autistic child I am clueless about brain development).

Why did my son respond so quickly?

I think that the government should study it and find out.

3. Because there’s no way of knowing how much improvement in a child’s behavior and abilities is the result of natural developmental processes, the only accurate way to test chelation would be to perform double-blind studies with autistic adults.

If you’re interested in an unscientific anecdote, I had all of my amalgam fillings removed 10 years ago and took chelation supplements for a few weeks. It was my dad’s idea; he is a major health faddist, antivax, supplements out the wazoo, toxic fumes in the woodwork, you get the idea.

I noticed some improvement in my sense of smell after having the amalgams taken out, but the main benefit was just the nice new pretty composite fillings.

I’m still just as autistic as ever.

So is my dad…
— Bonnie Ventura Jul 28, 09:38 AM


As in Bonnie's case, the anecdotal evidence I have seen seems to suggest the older you are, the less effective chelation is on autistic symptoms. The best results seem to be for children under five and progress seems to really slow down as children age.

I have read several stories though from people who have tried it on their teenagers and even on adults and some progress has been made.

Say it with me:

Sounds like something that the government should study.

May 30, 2005

Memorial: C. Chandler Perine



Marine Corps 1st Lt. C. Chandler Perine was my uncle and he loved me.

He died in the service of his country on November 15, 1970 at the age of 26 when the plane he was piloting suffered mechanical failure during take off from McGuire AFB, New Jersey

Chan, my father's younger brother, served as a helicopter pilot in Vietnam, a football player in college and "class flirt" in high school.

My youngest son, Chandler Perine Taylor, is named in his honor.

May 11, 2005

Letting Go Of Chandler

From the day our children are born, we have to begin letting go of them.

Our instinct as parents is to hold on tight and protect them from the harsh world and tell them where to go and what choices to make because we know better than they do. But if we are to serve them we have to let go of them just a little bit at a time as they begin to master their own lives, occasionally stepping back in when they are having trouble navigating (done with most frequency between the ages of 14 and 16).

My sons are 3 and 4 1/2 and at this stage of parenting I should still be able to, as my friends can, languish in that "My Boy's Gonna Be The President" dream where the possibilities of what they will become are wide open. The natural progression of parenting seems to be that as your child grows, and as the two of you get to know the person that they are (and are becoming), that field possibilities narrows. It happens gradually as you as a parent mature gradually, (hopefully) becoming more trusting of your child's decisions and less needy of having your child be The President. Then, eventually, your child is 16 and you don't so much need him to be The President as much as you need him to remember to clean his room and bring home the car in one piece.

When you find out that your son has Autism, you have to do 20 or so years of maturing in one day. You have to let go of all the expectations that you have for him, and for what you thought the rest of your life would be like. There is no 'growing out of' the adolescent fantasies that you have carried around for years, the rose colored glasses are just ripped right off, and it is painful.

It is painful, but not necessarily a bad thing.

Learning to give up some of the things that you have always wanted and face reality can be a gift. It has been a year since we found out about Chandler's Autism, and I am at the point of having gone down the path just far enough to look back and see how far I have come. Not how far Chandler has come in his "recovery", but how far I have come as a mom and a person and a grown-up.

I was fortunate to grow up in a church that had a lot of good teaching and preparing for life stuff. One of the great perspectives I learned on parenting when I was still a teenager was the idea that our children are not really ours. They are a gift from God. That they are his and he has entrusted us with their care. The idea that he has trusted these precious little ones is both a huge responsibility and a huge relief for me, because it reframes parenting in a really balanced way.

It describes a relationship to them in which I am responsible for their upbringing, but God is responsible for their life. That I am to love them and mold their character, but God is responsible for their destiny. I am merely preparing them for the journey that they will walk with God, and He will be there with them on that journey when I fail them, or when I am long gone.

For me that is freeing because it relieves me of the panic that presses on me when I begin to feel that I am responsible for the men these boys will become and if I screw up then they are doomed. (Any one else feel like that sometimes or is it just me?)

While I thought that I was pretty good compared to most mom's at "holding my children with an open hand", Chandler's diagnosis exposed my still much too fantasy based grip on My Children. After all, if I truly believed that my children were are gift from God for me to raise to the best of my ability and then offer back to him, then why would it matter quite so much to me that my boy is so different from all the other little boys. Certainly I would worry for him, but even then, if I trust that God made Chandler just as he wanted him to be, and had charted out his own distinct journey, should I not be able to trust Him that He will take care of this little life that He loves even more than I do?

Hudson Taylor wrote:

...the rest which full identification with Christ brings. I am no longer anxious about anything, as I realize this; for He, I know, is able to carry out His will, and His will is mine. It makes no matter where He places me, or how. That is rather for Him to consider than for me; for in the easiest position He must give me His grace, and in the most difficult, His grace is sufficient.

It matters little to my servant whether I send him to buy a few cash worth of things, or the most expensive articles. In either case he looks to me for the money and brings me his purchases. So, if God should place me in serious perplexity, must He not me much guidance; in positions of great difficulty, much grace; in circumstances of great pressure and trial, much strength? No fear that His resources will prove unequal to the emergency! And His resources are mine, for He is mine, and is with me and dwells in me.


I am a Christian. Years ago I stepped up to God and, in gratitude for his love and sacrifice for me, handed my life back to him. As Isaiah did after meeting God, I said, "Here am I. Send me." If I really meant it, then it should matter little where he sends me, or what hardships I face. I volunteered for service, and was given a very important assignment, to serve my wonderful family and my precious boys.

I have a very wise friend named Judy Nelson. When I was in college, and writhing in pain over men and stricken with panic and fear of the future, Judy used to say, "Ginger, it all comes down to whether or not you really believe that God is committed to your best interest". Her challenge rings in my head a lot these days.

If I really believe that he is committed to my best interest, and that he really loves my children more than I ever could, then despite the very natural instinct that I have as a mother to worry about my boys, I must know that everything is fine, because it is as God has had planned all along. And God can be trusted with my boys.

So this is where we circle back around to Letting Go of Chandler. When I look at the gorgeous faces of Webster and Chandler, the love that I feel for them is practically brain melting. The thought of them going out into the world gives me a stomach ache, but the harsh revelation of our little one's "specialness" is an early reminder that our job is to get them ready to do just that, be able to go out into the world and set off on a journey that we can't really go with them on. ("Ships are safe in the harbor, but that is not what ships are for") Webster is benefiting in that I spend much more time thinking much farther ahead for him than I would have, had we still been allowed to loiter in "President Taylor" land.

So I am trying to learn to 'let go' of Chandler even as my love for him grows. I am trying to learn to serve him rather than serving my own ego's idea of what my son should be. The better I get at it, the more I see the poetry that Chandler is.

February 22, 2005

An Introduction to Chandler: Birth to Diagnosis




I have never really posted a good account of how we got started on this journey, and at this point I think it would be helpful to the new visitors that are coming to the blog. I suspect that many people are coming after watching the coverage on NBC and asking themselves, “could my child be autistic”. I write this with you in mind.

My husband Scott and I gave birth to our oldest son Webster in September of 2000. He was born 7.5 weeks premature and spent the first month of his tiny life in the NICU learning to breathe. Despite his rough start, he grew to a healthy little guy, and when he was only 9 months old we discovered that, Surprise! We were having baby number two!

Given the problems I had in going to term with Web, everyone was quite alarmed when I began having contractions with Chandler at only 5 months. I was ordered to bed and put on Terbutaline. After several weeks of not moving, I developed gestational diabetes and needed insulin to control it. I managed to stay pregnant to 36 weeks (to the day) and Chandler was born perfectly healthy.

At three weeks old, just three days after being vaccinated, he developed colic, which I have heard is common with ASD children. The only thing that soothed him was white noise, so I made a sound file with vacuum cleaner noise and looped it, and then would set him next to the computer speaker and turn it up until he stopped crying. He also had trouble controlling his body temp and would get flaming hot even though he was not really sick. We would strip him naked and cover him in baby wipes and call him Fire Baby.



All of this subsided after a while and until about 18 months he was a happy quiet baby who made lots of eye contact, played with his brother and sang the theme song to Maisy.



Around 18 months, on Halloween to be exact, I had a really hard day with him, and couldn’t really figure out what the problem was. I am fortunate to have a great group of girlfriends, 7 of us were pregnant at the same time and all the kids were born with in 6 months of each other. Chandler being the oldest of the pack.

We decided to dress the toddlers up in costume have a little parade through a retirement home near by, much to the delight of the elderly residents. It turned out to be a rough day for me. When all the kids happily followed their moms down the hallway, I was chasing mine who was heading out the door. When all the kids stayed in the day room where their mothers were, mine went down a hallway full of empty rooms and ran into the last door he could find. When I caught up with him it turned out that there was a bedridden man in that room who was quite tickled that the little alligator had paid him a visit. I figured God had told Chandler to head down that way so that he could have a little holiday cheer.

The rest of the day was exhausting. He would not hold my hand and walk with me like the other kids did, he would not let me carry him like the other kids would. Chandler wanted his own special tour of the place, and he didn’t really care if I came with him or not.

Afterward, we all gathered outside for pictures. I couldn’t hold him still for them and eventually gave up trying to wrestle the alligator.

That night we went to a party at the neighbors. There were a bunch of older kids running on hardwood floors, and things got very loud. As things got louder, Chandler got more upset. While his older brother was running in circles and laughing his head off with the other children, Chandler eventually became completely distressed and I couldn’t comfort him, so I took him into the back bedroom. As soon as I shut the door, he took a deep breath and flopped onto the bed as if to say, "thank God we got out of there". It was clear that he could not handle what was going on in the living room. Later that night when things calmed down, we tried to take a picture of our boys with the neighbor girls, but despite them being the only ones left in the house, he just could not handle it.

After Chandler's diagnosis I went back and watched home videos to find out when things started changing for him. We had a gap in our video's between my older son's birthday in September and Halloween. It was clear that he had changed sometime during that time. After watching the videos I checked his shot record and found that Chandler had been vaccinated just before the gap in the video, five weeks before Halloween.



From then until Christmas, I noticed that he was harder to handle than my friends kids were when we were in public, but kept telling myself not to compare him to others, or to his brother. I was getting worried that his speech was not really coming along. Scott and I had agreed that he was going to be a quiet guy like his daddy, and we would have to take special care that he did not get overlooked. Especially when his brother had such an “in your face” style when it came to his own needs.

We did and so we always knew what he wanted, even when he didn’t “ask” for it.

I am a former family therapist. I have an M.S. from Johns Hopkins in adolescent and family therapy and, I had one autistic client when I was doing social work in the foster care system in Baltimore during my schooling. Although not specifically trained in treating autism, I was certainly more than familiar with it and qualified to screen for it. In January it started creeping into the back of my mind here and there, but I told myself to quit diagnosing my son and let him progress on his own time. (I have tendency to diagnose and classify my friends and family, my own little obsessive game) At the end of January, I dropped him off in the nursery at church and as I was walking in the door I thought, “please cry when I leave so I know you are not autistic”. He didn’t cry. I told myself not to be paranoid, that he was probably fine, but if he was still not speaking more than the three or four words he had by his second birthday, in March, I would look into it.

In February my friend Julia, Chandler’s god mother, was over for a visit. She began to talk to me about how much she loved Chandler and wanted to connect with him, but that she was finding it difficult. She said, “I have a friend whose son was having a few problem, but they got him some extra help and he is doing great now”. I thought, “Shit, she sees it too”. Up until then no one had mentioned that they thought anything was wrong. I asked her if she was talking about autism and she said, “Oh, are you already thinking about this issue?”. I told her that I was taking him in for his 2 year appointment in a month and was going to see if his doctor saw any cause to worry.

It was a casual conversation, and she handled it very gracefully, but when she left I felt like I had an elephant sitting on my chest. I knew sitting on this any longer would be irresponsible of me. So I got out my DSM and read the diagnosis for Autism, then went online and pulled up the screening questionnaire that docs use when they suspect it and watched him very carefully over the next two weeks and every day felt more panic and depression. I waited a week to mention things to Scott, and even then did so really slowly. He was not worried, and reminded me that his mom kept saying that, “Scott had done that when he was a baby too”, about almost all of Chandler’s quirks. And since Scott was fine (just very, very shy growing up) Chandler would be too.

I talked to Webster’s god father, whom I trust immensely, and as he is a doctor, asked his advice on proceeding. He suggested I not mention my concerns to Chandler’s doc when I went into the appointment initially, and see what the doctor picked up on. That way I could know that he would have some objectivity and if he suspected it, I would know that I didn’t plant it.

Well we were only in the office about two minutes before his doc started asking me the screening questions for Autism, which I answered with specific examples rather than generalities. He said that he would like him to see a specialist that evaluated children’s speech “and other things”. He gave me her number and asked that if I had trouble getting an appointment, to call him and he would make sure I got in quickly. Neither of us mentioned our autism suspicions.

I decided at that point, I was not going to be the first one to say the “A” word, to any of the professionals, until they said it to me.

I called her that afternoon, and although her voice mail message said it could take up to a week to get a return call and a month to get an appointment with her, she called back that afternoon. She said she had talked to the doc and she had a cancellation the next day and wanted to see him. She asked me questions that I answered again with specific examples, and at one point in the conversation she said, “it sounds like you know what we are talking about”. I answered that I was a former therapist and familiar with problems that some children had and left it at that. Then there was a long awkward pause, as I am sure she knew that I knew, but didn’t understand why I didn’t finish up the thought. But I was determined not to call it Autism until they did.

So we went in to see her the following day and after about 20 minutes with him, she sat me down and began to talk to me about his development problems, his speech delay and that he seemed to be lacking some of the basic skills that lead to speech. She again stopped and asked me about my therapy background, and gave me the chance to tell her I suspected Autism, rather than her having to drop the “A” Bomb on me. But I still let it be awkward rather than lable him myself. So she finally got to the place in the conversation where you tell the client what kind of therapy that “autistic children benefit from”, and my heart just fell into my stomach. Even though I already knew, I still wanted her to say it was his hearing that was defective, not his brain.

I managed to keep it together until I got to the car, then spent a long time sobbing. I eventually went to the store and bought the book that she recommended and went home.

When I came in Scott asked me how it went. I couldn’t really answer him, so I just put the book on the desk in front of him and started crying. He gave me a hug for about a second and then started acting strange for him.

You see no husband in the history of marriage is as good as mine at taking care of his wife when she is sad. He should teach a class on it. No matter my level of distress, Scott can absorb it and it doesn’t rock him. He usually just holds me until I am better.

But at this moment, he gave me a begrudging one second hug and said, “I am gonna go hug Chandler” in a very strange tone of voice and left me sobbing on the couch. At that moment I realized that Scott had gone bye-bye. I fortunately had the presence of mind to make the decision that I would just have to be OK with whatever he did over the next few weeks seeing as he was much less prepared for this diagnosis than I was.

He floated around in a haze for a couple of days, and when I asked him his thoughts on how we should proceed, he couldn’t really answer. A few more days went by and I told him that I was starting to make decisions for Chandler with out him, and I wanted to give him a chance to give me his input. He said that he still couldn’t wrap his brain around the whole thing, and that he trusted me to make the right choices. He just spent a lot of time hugging our baby.

Somewhere during the course of the first week we got into a conversation that again compared Chandler to his daddy. It struck me that over the last several months I had been saying that the two were so alike, so that if Scott was normal, then Chandler must be normal too. Turns out that they are so alike because they are both on the Autism Spectrum. I met Scott in high school when he was 15 and terminally “shy”. He was sweet, but awkward and a bit nerdy and seemed to talk at people more than with them. He had a big crush on me, but he was of little interest to such a social butterfly as I.

We didn’t date until 10 years later. I had not seen him for 3 years and was surprised at what a bright, well-balanced, good looking man he had become. A very different guy than he was at 15. I always just thought of him as a very late bloomer.

The more we talked, and looked at Scott through the ASD lens, the more clear thing became. Eventually I went to bed and he stayed up all night reading everything he could on children and adults with Autistic Spectrum Disorders. In the morning his said his whole life made sense all of the sudden.

It still took him another two weeks before he could join me back in our world. I didn’t press him, just asked how he was doing and let him alone to process, then one day he re-engaged and started talking with me about what to do for Chandler.

It has been a year since then and it has been quite the emotional roller coaster. I think it was only last month that I started to begin to feel normal, but I certainly don’t feel all the way “normal” yet. It is a really hard truth to balance.

It is very hard not to live in the past and think, ‘If I had only ______, then he would have been fine’ and not to worry about the future, Chandler’s life, the effect on Webster, our finances, our marriage and on and on. The only way to keep from being overwhelmed is to just deal with Today. To trust that God has made Chandler, and all of us, just the way he wanted us to be, and do the best we can for Today.

Ironically, the best teacher on how to do that is my beautiful son, Chandler. One of the gifts of his autism is that he is always “in the moment”. 5 minutes ago was so 5 minutes ago. An hour from now is not even on his radar. He does not regret, and he does not worry. He is just happy to be jumping up and down.

We are so blessed to have a son to remind us of the joy of living.

September 11, 2004

Chelation - sort of

I started Chandler on DMSA, but it was a false start as the next day I got sick, handed the care of the boys off to daddy and went to bed for two days. He was not really up on what I was doing and frankly I was on to much Ny-quill to care, so Chan only got about a day and a half on it.

Something cool did happen though. Chandler was in the play room watching a vocabulary video, one of the words of the video being "apple". He came running out of the playroom and pulled me to the kitchen, looked at the apples and said, "apple". He has never asked for a specific food before. If you hold up a banana he will name it for you, but he has never asked for one. He ate the apple down and then dragged me to the kitchen and did it again.

I gotta go buy more apples.