September 8, 2005

Thanks to Dan Olmsted

Thanks to Dan Olmsted for writing about me and my views on Leo Kanners big mistake this week in his column. For those of you who are new to the site, welcome. The piece that Olmsted referred to, "In Defense of my Ire" can be found here in its entirety.

The Age of Autism: One angry mom
By Dan Olmsted Sep 7, 2005, 14:55 GMT

WASHINGTON, DC, United States (UPI) -- Ginger Taylor of Los Angeles describes herself as 'a thirty-something wife of the nicest man alive and mother to the two cutest boys ever. I am a former Johns Hopkins-educated family therapist, and also a Web designer. Most importantly I am a mom. Chandler, born in March `02, is autistic, and Webster, born in Sept. `00, is a mostly typical boy, with a few Autism Spectrum Disorder traits.'

When Taylor saw the recent Age of Autism columns on the first child diagnosed with autism -- and how he appeared to improve after treatment with gold salts in 1947 -- she got mad. As a Hopkins alumnae and a family therapist, she could not believe that doctors at Johns Hopkins, where that first child was diagnosed, had somehow missed the possible connection.

Leo Kanner, the leading child psychiatrist of his day, first diagnosed autism in a child known as Donald T., who came to see him at Johns Hopkins in Baltimore in 1938 at age five. Seven years later, Donald had a life-threatening attack of juvenile arthritis and was treated with gold salts at the Campbell Clinic in Memphis.

That is according to Donald`s brother, who still lives in the small Mississippi town where the two grew up. Donald also lives there, but has not responded to our request for an interview.

Following are excerpts of a post by Taylor on her blog,


Looking around, I seem to be the only one who is so upset with Kanner for not giving Donald`s medical treatment the consideration it deserved in assessing his considerable improvement from his 'nervous condition.' I think my anger at him for this stems more from a professional place than the place of a parent, although the two together are a potent combination.

As I have mentioned elsewhere, I am a former marriage and family therapist and earned my master`s degree at Johns Hopkins. I also worked there as a grad student, doing my practicum in the psychiatry department in an outpatient program for adolescent substance abusers.

With my professional history, I feel able to put myself in Kanner`s shoes, in a basic way, in that I treated 12-year-olds at Hopkins, and I know what a huge responsibility it is. My criticism of him, I believe, is founded because I know how irresponsible it would have been for me if I had done a history on a patient, and not to included something so vital as the near death, extensive medical treatment and subsequent vast improvement of two very serious medical conditions, of said patient.

If I took patient histories this seriously as a 27-year-old grad student getting her master`s, then Leo Kanner, seasoned medical doctor and Psychiatrist, sure should have taken it all the more seriously.

If I went to the home of a patient to do follow-up after not seeing him for a few years, and noted that he had managed to kick heroin during a break in drug treatment, after a change in living arrangements and after a three-month hospitalization for a life-threatening illness, and I only reported the great living arrangement that he was in, I would not be doing my job. It could end up harming the patient, his family and heroin users everywhere who could be offered a treatment that might have stemmed from whatever medical treatment could have sped his recovery.

Is there a new medical treatment that can help heroin users kick the habit? Who knows? Ginger didn`t write it down, so no one looked into it.

Even if the family had not mentioned the hospitalization or attributed his recovery to it at the time, it would still be my responsibility to get ahold of his medical records even if only to assure continuity of care. This would be so much more true of Dr. Kanner as he defined autism and therefore took responsibility for every aspect of the diagnosis and all of the subjects that he took under his care. Add to the fact that he was a doctor at Hopkins in the first half of the 20th century, when doctors were considered godlike and few people questioned them, and his breach becomes all the more egregious.

In defense of Kanner, I don`t think that he was a heartless parent-basher and he should not be placed any where near (Bruno) Bettelheim, who destroyed so many lives and families. I just don`t think that he was thorough enough at a moment where it really, really counted. He made a freshman mistake that cost many people dearly and left the door open for Bettelheim (who blamed parents for their children`s autism).

'In further defense of Kanner, I have not read his follow-up paper, and I am taking the word of (The Age of Autism) and others who have written about it. I tried to read it last week but got so emotional about what happened to these children and couldn`t continue. I will reserve the right to amend my judgment of Kanner after I get the guts to read his paper.

In respect to the gold salts, I did not read the discussion of how the gold salts treatment may have impacted Donald`s 'nervous condition' as a recommendation for parents to run out and try gold on their children, but merely as a discussion of how gold may have made a change in this specific case and what that might tell us about autism and its potential treatments. What I took away was not that gold could mitigate my son`s autistic symptoms, but that Donald`s treatment represents another case that points to the toxicological and autoimmune features of autism.

I don`t see gold as the answer to my son`s autism any more than I see kitchen mold as the answer to his ear infection. But the happy accident of a moldy petri dish in 1928 has led to hundreds of antibiotics to treat everything from a skinned knee to anthrax. The happy accident of Donald`s recovery might have meant the same for autism, had Kanner written it down.

If it had come to the attention of the medical community that gold salts had improved autism, then autism may have been recognized as an autoimmune disorder long before the 21st century. It may have also have shed light on how the body`s immune system works and how autoimmune responses are triggered, giving immunologists information that could have moved the entire field forward. It could have led to a better understanding of toxicology and how heavy metals could contribute to neurological disorders, and lead may have been removed from paint decades earlier than it was.

At the very least, we might know what autism, in all its forms, is by now.

Would any of these things have happened? Who knows? Leo didn`t write it down.

This ongoing series on the roots and rise of autism welcomes reader comment. E-mail:


R2K said...

Hi from NYC!


Kristina Chew said...

We need to know more specifics about Donald as "recovered." Reading Kanner is very different from reading Bettelheim, whose training was as an art historian. kc

Maggie said...

I am a mother of 3 year autistic twins and I believe firmly in the relationship to weakend auto-immune function and toxic exposures that are too burdensome for the little guys to handle. The more I read, the more I am convinced.

AmyLouise said...

Ginger have you seen this?

Ginger said...


Really interesting site. Long. I didn't finish going through it, but I will.

The problem with the site, as is with much of the messages that the ND community sends out is that it is not easily digestible to its target audience.

The intent of the site is clearly to let NT's behind the curtain and share the fact that so many things that are intended to help autistic people really causes them pain. A message that really needs to get out. (It brings to mind Dave Barry's comments on his wife's hospitalization during which she had medical care 'inflicted' on her.)

But the problem is that the people who really need to hear that message are likely to be really offended by the assumption that the site seems to make. That those trying to improve the condition of those with autism are awful people who are just out for money and power.

I am someone who is open to the messages that the Neurodiversity has to offer, and who doesn't even really like ASA. (I was put off by their new campaign for other reasons.) But even I still felt like the web site was trying to tell me that I suck, and it made me not want to continue reading.

It just asks much more from the reader than I think many are willing or even able to offer.

If the purpose of the site is to let off steam, or to rally adult autistics to fight for their rights, then it serves its purpose. But if it is for parents like me, then I think that it needs to be tweaked to be less accusatory so that parents can hear the message and take something away from it.

I have a hard time seeing how any one at ASA would be able to internalize the message much at all.

The bottom line is that if you want your audience to embrace your message, you can't have contempt for them.

I feel like that the biomed's and the NeuroDiv's need an interpreter.

Does Babelfish have an Autistic to NT converter?

AmyLouise said...

Perhaps you are right. The site is quite "accusatory" in places, but if you had been locked up and abused like that person, you might feel "accusatory", too.

Thanks for trying to understand her point of view.

Here's more from a scientist - on Dan Olmsted's great "discovery".

Ginger said...


I don't begrudge her the right to be angry at all. I sure would hate to have all my decisions taken away from me and be forced to fit into some one elses plan for my life that I didn't want.

I am merely looking at it from the impact that her story could have on people who need to hear that message. More from a PR point of view.

The hitch is that expecting people with severe communication disabilities to do their own PR effectively does not work. The people with the good PR skills, don't understand the autistic mind, and the autistic minds don't have good PR skills.

A question to the NeuroDiv people reading this thread.

Among the adults on the spectrum who are advocating for adult autistics, who do you feel does the best job of articulating how you feel and think about things? Both who you individually identify with and who you think does the best job for the ND community as a whole?

amylouise said...

I think you might start by calling us what we call ourselves. "autistic adults".

hence the "autistic adults picture project"

Lenny came up with ND and it looks like you just invented neurodiv. I'm sure there's no harm intended but it's not exactly respectful, either.

No one person covers all the angles of the autistic adult view. No one person could.

But I would say that jypsy (who's presence is more limited than it used to be) and together cover most of the points.

jypsy has AS and is the mother of a "classic" autistic teen and an AS teen and 2 NTs one adult and one teen-

The gang at are mainly "low functioning" or "classic" autistics, but they do have Phil Schwartz, for example, an AS person.

Phil is also a parent of a "low functiong" or "middle functioning" child. But Amanda is not a parent, and I don't think that the others at are parents.

I wouldn't recommend "aspergia" or "aspies for freedom" just because of the heavy emphasis on Aspergers.

oddizm isn't a big deal, but she is basically in line with Amanda and jypsy.
oddizm is also
oddizm/autismdiva has AS and has a middle functioning ASD child who is also physically challenged. is a mom who is sort of on the spectrum and has 2 "classically" autistic kids.

Anonymous said...

Ginger stated: "It just asks much more from the reader than I think many are willing or even able to offer."

Perhaps it just asked too much of you. Who else can you really speak for? For me, and i've been in this for quite a long time, it's one of the most profound "statements" I've come across. It was striking to see the same visuals matched with vastly different wording. So, no, it didn't "ask too much" from this reader.

But, then again, maybe you are correct, Ginger. Maybe it is asking too much. After all, one mother, who after seeing an asd adult type exclaimed: " I didn't realize people were still thinking when they didn't talk."

UM, WHAT?!?!?

Ginger said...


It didn't ask too much of you, but you are not really the target audience. This is already a message that you embrace, and perhaps it is even your story.

There is no question that it is a profound statement.

My concern is this, if this profound statement is to make an actual change in the way the neurotypical/biomed/mental health works/officials see autistic individuals, change health policies and have and actually create new and better understanding, then it has to be delivered so that those people who are actually most responsible for the problem can internalize.

The truth is that, as shown by the extreme example of that mom you quoted, We Don't Understand. That is a large part of our own stress. The more sever the autism, the more baffling the individual to the neurotypical person. Even if we know them really well and love them longingly and desperately want to know what is going on with them, it is still hard to predict behavior and understand their wants and needs. Forget being able to put ourselves in their shoes.

Even just take the example of physical pain. The fact that head banging could be a comfort is beyond understanding to the rest of us who pretty much live by a policy of 'don't let anything hit you in the head, ever'.

To expect that we could internalize these really foreign concepts about an issue that is as emotional as the lives of our children, and do it while being insulted, is to assume that we are much more highly evolved creatures than we are.

Let me use your posts on my site as an example.

I don't know if all the "Anonymous" postings on my site in the last few months have been you or not, but many of them seem to have the same tone and attitude toward me, so for the sake of argument let's just say that they are all you (and if they are not all truly the individual you, then they are some sort of collective you that all has the same attitude, so it works either way)

On this blog, especially in relation to the adult autistics that post here, I have tried to take a humble attitude. Even while stating my opinions and observations, I am trying to be teachable on this and deferring to good points when they are made. I have said that I know I have much to learn from the neurodiversity movement and that as my son gets older and it becomes more clear of the level of autism that he will be living with, I will be seeking the input of those who have gone before him so that I can be the best mom I can for him.

I am your target audience.

I am a biomed/chelating mom, who is just starting out on the journey of raising an autistic son. I have an ear open to you and have worked hard not to be offended by attacks by adult autistics so that I don’t miss the important lessons they have to offer, or miss the chance to build some bridges. I am a mental health professional with an autism blog that a decent number of parents read and Dan Olmstead has even published my writing internationally. I guess that I could even be labeled a ‘mercury mom’ as I am helping out with the graphic design for the next rally in DC to get mercury out of vaccines. Winning me over, or at least turning me into a sympathetic writer about the neurodiversity movement, would be helpful to autistic adults in changing perceptions about them

Yes, as you say, I can only speak for myself, but I am your target audience. I am a tiny little focus group that can be used to see how well your message is getting out to parents.

Despite that, the “Anonymous” comments on the site have an undercurrent of contempt for me. Some of them are outright mean. If you really want things to change, if you really want ME to change, is treating me with contempt the best way to do that?

Much of the sentiment is that we are idiots for not just knowing how autistics should be understood and treated. The truth is, we don’t understand. Not because we are idiots, but because we perceive the world very differently from you and even when we are trying to understand, it is really hard. To treat us like we are idiots, or worse, that we are insensitive to autistics deliberately and consciously, does not serve to teach us, but to alienate us.

Now I have made the decision to blog, therefore I have opened my self up to criticism and have to be willing to take whatever lumps that my readers may offer, so I am not suggesting that you should not be critical of me. In my mind that is what blogs are for and challenging other’s writing is what makes good public discourse. And good public discourse is what creates understanding and changes society for the better.

I am merely offering my suggestions on how to help me and mine listen and learn from you and yours. If that is going to happen, you are going to have to offer us grace.

I have called several times in the dealings between the two groups for each to offer the other some grace. I make the same appeal to you.

I don’t understand. I am trying to understand and figure out how I can fit that understanding into the course that I think is most wise for my son and my family. But please offer me a little grace.

Being the parent of an autistic child is hard. Knowing where the balancing point is between approaching him in his world, and pushing him to come into our world is hard.

The easier you can make my education on the autistic experience, the easier I can make Chandler’s experience in an non-autistic world. Please be gentile with me so I can learn.

Ginger said...


I had no idea my shorthand was at all offensive. It was really just shorthand. Sorry about that.

A question, the term 'autistic adults' seems to broad, as I know of autistic adults who actually want a cure and use biomed on themselves and their own children. I thought since Kathleen's site was called, that "NeuroDiversity Movement" would be an appropriate title, and ND was an ok shorthand for me as I am being lazy.

So the question is, is there another more narrow title that would apply just to adult autistics that were, anti-cure, pro civil rights, etc?

I know I need to do a lot more reading, so I may be asking questions that are readily available if I spent a few hours digging. Please excuse.

amylouise said...

About the ND, NeuroDiv... business.

I wasn't offended, but I know enough from a light brush with Deaf culture (notice the capital letter) that you can offend people by referring to them with the wrong label and it's always good to check if a person prefers.

There are people who see a big difference between "Asian" and "oriental" (though oriental just means a person from the East, it can feel like a racist remark to some). Some "Asians" really don't like the "Asian" concept, either. So, if you can, it's good to ask.

There tends to be a big divide between "autistic adults" and "adults with autism".

People who call themselves "autistic" are saying that that is what they are and there is nothing that can be removed from the to make them not autistic without killing them or entirely making them into a person that would be unrecognizable to the current person as "self".

Jim Sinclair has an essay on the problem with "person first language". I'm pretty sure you can find it on

The adults you know who are using biomedical or whatever to try to become normal, or however you might describe their efforts, almost certainly would call themselves "adults with autism" or "people with autism", or "Sally with autism", and so on.

One thing that makes me testy, angry and or cranky, is the idea that you have bought into the mercury poisoning hypothesis without any basis. I know you won't believe that, but it's true. As a parent of an autistic person and as a person on the spectrum myself, I feel bad for you all getting ripped off, when your child could have the same gains without all the rigamarole, drama and expense. Sorry, it's just true. You have been lied to about the mercury poisoning thing and you are entrapping and ensnaring more parents when you "sell" them on the idea. It does make me angry to think about that, and while yelling at you doesn't help anything, it's hard not to yell. You really are potentially harming autistic children with the mercury poisoning hype. Really.
No, I'm not a big pharma rep. I'm a mom.

Steve Z said...

One thing that makes me testy, angry and or cranky, is the idea that you have bought into the mercury poisoning hypothesis without any basis.

I agree with Amy. It doesn't really make me angry anymore but it is frustrating. When you hear all of the information presented as a whole it makes a very convincing argument for thimerosal as a cause. When you scratch the surface, tug on a few threads, the whole tapestry starts to unravel. Very few of the folks in the Autism = Mercury poisoning group take the time to understand the science and consider other explanations for individual markers and symptoms. They are so convinced that mercury is the primary cause that great effort goes toward incorporating all research into the tapestry. I've learned a lot about autism and associated comorbidities. Do I know what causes it or know how to treat it? Hell No. If anyone had these answers it would be big news and they wouldn't need to purchase advertising in the NYT to get the word out. Any parent of a child with autism that is willing to state with 100% certainty that autism is one thing, or caused by one thing, is not helping their child. If you choose to believe that your child became autistic from exposure to thimerosal, that is certainly your right. When you join forces with groups that proclaim all people w/ autism (including my son) are mercury poisoned then I take offense. Can you understand that?

I understand that you are angry, I am too. Raising a child with autism is a challenge and can test our patience. Since you seem to be reasonable and receptive to new ideas, why don't you present each key point of the mercury hypothesis (one at a time) and see how they hold up. Many of the "Studies" that are presented as science have been capably deconstructed elsewhere and they are severely flawed. If you are indeed interested in helping your son, do what any of us would expect from our parents. Keep an open mind and be honest with yourself and your child.


P.S. My son's regression coincided with the vaccine schedule.

Anonymous said...

Dear Ginger:

I am Anon 11:52 am to whom you replied. I have only posted to your blog once - that specific post to which you replied.

I actually am most certainly the "target audience" beyond all doubt. Also, please understand I think you are a good person and of course I extend to you grace.

I am glad you are willing to learn and be open. But you must be aware of two things:

1. You are admittedly somewhat new this; some of us have been dealing with it for much longer and looking into it from the depths of science. So we have seen and done much more. That's not meant in any unkind way -- it's just a fact.

2. The printed word is very powerful and the fact that you have background in psychology and an MS from JHU lends you a certain "credibility". So, you actually have tremendous responsibility as a blogger on the subject of autism.

I am not in any single "camp" and I am parent, so I understand from the depths of my soul about being the parent of a child with asd. Again, I am aligned with no one. In the past, I have embraced certain things that I thought were the definitive answer. As time goes by, I begin to see things very differently.

To reitierate: I have only posted that one time (and now) as Anon --so I am not your nemesis. I have reason for being Anon. I have been shunned, as a parent, by those who insist that it's the mercury and I have been the subject of disdain by some of the top leaders in the mercury movement. I just simply consider this unacceptable.

As time goes by, you may perhaps see the complexities and the depth of this issue from a different perspective than where you now stand.

Best to you, Ginger. I will close with quote from Anais Nin :: "We don't see things as they are, we see them as we are."

With peace, grace and kindness to you on your path - from another parent in California.

Ginger said...


This is all great information for me.

Another question. How do "Autistic Adults" differentiate those who have DSM diagnosable "Autism" and thos who are somewhere on the spectrum, but can fully participate in society?

And in response to your statements about my son's autism and mercury treatment. With all due respect, I think that I am in a much better position to judge the relationship between the two in my son and the effectiveness of the treatment that he is getting. You are offering your opinion of Chandler's medical condition as fact with out any reasons for your assumptions.

I have written reciently about the gains he makes on chelation, many more of which I have seen this week. If you have read something that I have written that you feel needs to be called into question, or if you just don't believe me, I am certianly open to disucss that, but if you want to make such bold assertions, you gotta back it up with something.

Chandler was diagnosed with autism, then diagnosed with mercury and lead, and every time we do a round of chelation for his metal poisoning, the abatement of his autistic symptoms becomes more rapid. We have done it on and off now for more than a year and the jury is pretty much in. He is one of those kids whose autim is tied to metal.

I know that this is not all kids. In my talks with him, Kevin Leitch has said that he knows that his daughter's autism not tied to metal, and I believe him. He is in the position to know.

I personally believe that the evidence coming in shows that autism is more than one disorder, and I fully expect that eventually we will find out that Kevin's daughter and my son have different medical conditions that result in the same general behavior pattern.

Each of our passions on this issue are driven by our own experiences. We should make room for the idea that what you and I are experiencing are actually two (or more) things called by the same name.

BTW, I have never called any one a pharma rep and I never will. Except for April on Big Brother 6.

Watch the season finale of Big Brother LIVE, Saturday at 8!

Ginger said...


I hope that this site has demonstrated that I am trying to keep an open mind. Although Prometheus asked me on another blog what it would take to change my mind about Hg's involvement in autism, and I was as honest as I could be and told him that I would be really hard to convince me otherwise because of what has happened in Chandler's life.

Just to clarify, I am not one of those who thinks, Autism = Mercury poisoning. My position is more that SOME children diagnosed with autism are actually suffering the effects of mercury poisoning. Clearly there are some children who recover from Hg and their autism goes too. It remains to be seen if Chandler is one of those kids, but with each round, it looks more and more likely that he has a chance of dropping his DSM diagnosis.

And again to repeat, I don't tell family, friends or therapists when we are chelating him. They can tell for themselves.

This blog has an open offer for any one to bring up any science or discussion points they would like, so if you feel that I am ignoring something important, send me any studies you think I should read.

My only caveat is that we debate according to the rules that I posted a while back.

Ginger said...


I am glad to hear that you are not those other anons. I appreciate the kind words.

I understand you wanting to be anonymous, these are dangerous waters. It just makes it hard to keep track of who you are talking to, ya know?

1. You are admittedly somewhat new this; some of us have been dealing with it for much longer and looking into it from the depths of science. So we have seen and done much more. That's not meant in any unkind way -- it's just a fact.

No unkindness taken. True, and as I mentioned to Steve, I am open to personal advice and being pointed to all kids of sources, but I am of the feeling that since there have been so many shenanigans from the federal government all the way down, that no one gets a free pass. We all have to show our work and back up our sources.

Me included. No where will you find me stating opinion and then just saying, take my word for it, I went to Hopkins. I have to stand ready to back my words up, or tell people that they are just based on my own opinion, observation or feelings.

So I hope that you understand why I don't really just take the word of people who have gone before me.

After my first pediatrician looked me in the eye and told me, quite impatiently, that he did not use mercury vaccines, then injected my preemie (Webster) with 25 mgs of the stuff 5 minutes later, you might see why I am now from Missouri.

2. The printed word is very powerful and the fact that you have background in psychology and an MS from JHU lends you a certain "credibility". So, you actually have tremendous responsibility as a blogger on the subject of autism.

I really do take that seriously. I am all about full disclosure so that people can judge what comes from mental health training and what comes from mommy training.

I just did a shame on Orac on Pat Sullivan's blog for playing fast and loose with his professional ethics by offering his medical opinions anonymously. I want to make sure that I am not holding out my MS where it does not apply. I think that I have correctly billed myself as a mom with really good education in mental health that has allowed her to evaluate the research on autism at a decent level. Not as say, someone who has years of treating autistic patients under her belt. As I have mentioned, I had only one autistic client, and that was as a social worker, not as a therapist.

As time goes by, you may perhaps see the complexities and the depth of this issue from a different perspective than where you now stand.

I am sure that will be the case. It really has to be, as age and maturity always bring a different perspective. Which is why I am trying to take care not to dismiss other parents points of views, even when it is really tempting.

When I started sharing my own thoughts on my blog at the beginning of the summer, I was really trying to find out what my contribution to the world of autism was. Sharing my ups and downs with my own son, of course, but what else? The more that Chandler improved on biomed, the more passionate I got about the issue and wanting it to be investigated properly, so that naturally fell in.

But something that I really am starting to care about, is the huge divide in the autism community. There are two major camps that are serious odds when they don't have to be. They both have essential positions that need to be heard and discussed.

I know that I want this blog to be a place that both can come and know that their sincere thoughts and opinions will be respected.

There are one million places on the internet to flame at one's enemies. I would like this place to be one of the places that people can get away from that.

AmyLouise said...

Ginger wrote:
"How do "Autistic Adults" differentiate those who have DSM diagnosable "Autism" and thos who are somewhere on the spectrum, but can fully participate in society?"

Frank Klein has a full, certified, high quality unassailable "DSM diagnosis of Autistic disorder". He fits the classic description of a "classically autistic kid". He didn't speak until he was three and then in echolalia, that can not be Asperger's by definition, but he can drive a car and has had (a) romantic relationship(s) and is a really nice guy. If he hadn't been so badly abused by "normal" people in his youth he might be in a better position to hold a paying job, as it is he is on SSI. But, he sure sounds "normal" in a radio interview...except maybe his instistance on precision.

The DSM itself will likely be restructured and word on the street has it that Asperger's syndrome may be entirely trashed. There are good arguments for why there should be no separation between autism and AS. There is not tidy cut off point between "high functioning" and "low functioning" so why try to make such a division? What about "middle functioning", "high middle...", "low high middle..."
"high low middle..."?

Some Asperger's folks try to make a sharp divide between themselves and the "low functioning" ones as if those are contaminated. I don't know what percentage of online AS/autistics feel that way.

Jerry Newport won't call himself "autistic" though he seems to be just as "autistic" as Frank, or more.

I have looked at the evidence for the mercury causation and it is so poor that I have to assume that by chelating your son you are not affecting his autism, but that you are seeing coincidences or you are seeing what you want to see.

The only way to test would be if you could be blinded to the treatments you are using, 100% blinded, and then use a sham treatment on every other week or month...

Still, in *autism* as in the case of normal kids, there are jumps of development, so jumps of development during a week mean "jumps of development during a week", they don't mean "mercury is leaving his body".

Bonnie Ventura said...

Ginger wrote:
"How do "Autistic Adults" differentiate those who have DSM diagnosable "Autism" and thos who are somewhere on the spectrum, but can fully participate in society?"

Speaking only for myself here, I don't make such a differentiation. Full participation in society is a very nebulous concept that has no consensus definition and can vary considerably, depending on a person's individual circumstances and society's changing expectations. A DSM diagnosis does not necessarily mean that a person cannot live independently and participate in society. Conversely, the absence of a diagnosis does not necessarily mean that a person can participate as fully as he or she would wish.

I think we should be asking "How do we build a society in which all people, whatever their neurological type may be, can participate fully?"

Ginger said...


I have looked at the evidence for the mercury causation and it is so poor that I have to assume that by chelating your son you are not affecting his autism, but that you are seeing coincidences or you are seeing what you want to see.

The only way to test would be if you could be blinded to the treatments you are using, 100% blinded, and then use a sham treatment on every other week or month...

Still, in *autism* as in the case of normal kids, there are jumps of development, so jumps of development during a week mean "jumps of development during a week", they don't mean "mercury is leaving his body".

Again, this is based on your assumptions, not on observing my son.

We are fortunate to have a large extended family living close together. Between my and my husband's immediate families and their children, there are 19 of us. That works out to one birthday party every three weeks. Throw in holidays and random get togethers well, we see each other pretty often.

When Chandler's Uncle Jon shouts, "look what Chandler is doing", and the entire group becomes silent to listen to him, then bursts into applause, it is a pretty good indicator that what I am seeing is not in my head, nor that it is normal development.

There are 7 other cousins and all the adults are well aware of the pace that normal child development takes.

Their reactions, in addition to the comments that is therapists make, all reinforce what I am seeing.

I have been doing this for a year and a half, and the theory that he makes unusual gains when taking oral DMSA have been tested and retested.

How many coincidencetal huge jumps in development while chelating does it take before one should start to believe that it is the chelation that is causing the changes?

My understanding of one of the means used to determine efficacy of a drug is that you offer the drug, see if there is an effect, remove the drug, see if the effect goes away, then introduce it again. If the changes in the patient coincide with the drug use, and not when the drug is removed, it is found to be effective.

We have seen this at least a dozen times now.

He began chelation again two weeks ago and again I am floored by the changes he has made.

Chandler has never been able to endure circle time for more than a minute or two, and that was holding him on my lap. All summer, his aid has been working on circle time with him in Sunday School to little result.

After two weeks chelation he sat through two out of three circle times on his second day of school. By day three he sat through one that was 20 minutes long. (both with his aid)

It is a hell of a coincidence that we have been working on circle time with him since February, and he gets the concept suddenly after we begin chelation after a three month break.

Certainly there are other factors that could have influenced him getting the concept now, but this is just one example of dozens.

Which is why I want so passionately for chelation to be properly studied.

If you don’t believe that chelation improving my son’s autistic symptoms, that’s ok. But I have put his story out there, and I think that the burden of proof now falls on you, or those who want to dismiss it is as coincidence, to prove it, or to prove me wrong.

If you want to challenge it, then give me an objective standard. How many coincidental gains should me make? Convince a skeptical doc? I am not sure how I can convince you of what we are seeing.

Ginger said...


The question you pose is a good one.

I know I sound like a broken record, but I think that the best way for something like that to take place is for autistic adults to reach out to parents, who will in turn reach out to the rest of the planet.

Your response to my question is enlightening. Do you think that is the way most adults with autism define autism? If so it would seem to me that it is part of the problem in communicating with one another, as parents are kinda speaking a different language.

I think of "Autism" in DSM terms. I would like him to loose his DSM diagnosis. I would then consider him 'on the spectrum', but not autistic. 'On the Spectrum' is not scary to me. Personally, it does not represent the same threat to his safety.

I guess the general FEELING that I have is that autistic kids don't know understand that going in the pool on their own can kill them, but kids on the spectrum do. Once he is across that line, everything else is cake.

Another question. Do you think that autistic adults who have difficulty with biomed parents understand the fear we have for our children's safety?

I feel like if they knew how scared we were of their lack of a sense of danger (both of the neighbor's pool, and the predators out there)they might cut them a little more slack on wanting their kids to recover from autism.

Bonnie Ventura said...

Ginger, I agree with you that there needs to be more dialogue between autistic adults and parents. Another point to keep in mind is that some autistic adults are parents; we're not talking about two completely separate and distinct groups.

As to your question of whether most autistic adults would agree with my views, it's hard to say, but we do tend to be more concerned about social and civil rights issues than about diagnostic labels.

You wrote:

"I guess the general FEELING that I have is that autistic kids don't know understand that going in the pool on their own can kill them, but kids on the spectrum do. Once he is across that line, everything else is cake.

Another question. Do you think that autistic adults who have difficulty with biomed parents understand the fear we have for our children's safety?"

As you said, it's a matter of different perspectives. To an autistic adult, a child's lack of awareness of danger is a developmental issue that will naturally improve over time, not a defect that urgently needs a cure. (After all, we did plenty of dangerous things when we were kids, and we survived.)

Your pool example reminds me of an incident when I was five years old. My family had a swimming pool with a slide in the deep end. I was sitting in a plastic boat under the slide, and I told my sister (who was three) to go down the slide into the boat. When she got to the bottom, I pushed the boat away so that she fell into the water. I wasn't trying to drown her; it was just ordinary sibling pestering as far as I was concerned, and I just didn't think about the fact that a three-year-old couldn't swim in the deep end. My mother got her out, explained what I did wrong, and sent me to my room to think it over.

As I grew older, I understood more about danger, but that was the result of more experience and maturity, not of any sort of cure.

I personally don't have any hostility at all toward parents who are trying to improve their children's health. We all do that to some extent, making sure that our kids get a healthy diet, regular exercise, and so forth. But I do think parents in general need to be more skeptical about alternative health approaches because there are a lot of con artists preying on parents' fears, and some of their products are dangerous. A child can also be psychologically harmed if he often hears himself described as sick or disordered and in need of a cure.