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Autism Vox

The truth about autism: It’s not toxic

by Kristina Chew, PhD on February 26th, 2007

There is a lot of mythology, a lot of lies, out there about autism. According to Anne McElroy Dachel, an autism mother and a Generation Rescue “rescue angel,” the “really big lie about autism” is that better diagnosis is the reason for the rise in the prevalence rate of autism—1 in 150 among American children according to the latest figures from the CDC. I would rather say that, to claim that vaccines, and specifically the mercury-based preservative thimerasol cause autism, is misleading and potentially dangerous.

Even more misleading, though, is what Dachel suggests that autism is. In her February 25th op-ed, The Really Big Lie About Autism, Dachel characterizes autism is an “environmental neurological disorder” and singles out thimerasol as a culprit (not surprisingly, as Dachel is a member of A-CHAMP (Advocates for Children’s Health Affected by Mercury Poisoning). While (as I note below) she cites various statistics indicating a rise in the prevalence rate of autism, she does not otherwise refer to what autism is in her op-ed on the “really big lie about autism” except that it is, indeed, some kind of poisoning of children today by environmental toxins.

The truth about autism is something far simpler, I think.

The truth about autism is our children who have autism—is autistic persons themselves—and the daily round of joys and struggles that they go through, and that parents of autistic children try very hard to understand. Some parents, like Dachel, appeal to seemingly scientific theories to explain to themselves what autism is. But, even though Dachel attempts to debunk the “lie” of “better diagnosis” as the reason for the increase in the prevalence rate of autism, in truth an op-ed like hers only increases misunderstanding about autism.

Here is one example of what autism is like—-of “the truth about autism”:

My son Charlie went for a walk in Hoboken, New Jersey, with his grandmother (my mother; he calls her “PoPo,” the Cantonese word for maternal grandmother) on Washington Avenue tonight. It was starting to snow and Charlie held onto her hand and shuffled his feet in the little piles of flakes that were starting to accumulate on the sidewalk. I was walking behind them and we had just had dinner at a restaurant, the letters of whose name—-”The Mile Square”—Charlie had read out loud for us with a big smile. He identified both the “i” and the “l” in “mile” as “l”: Charlie seems not always to see the space between the line and the dot of the “i” and so calls it “l” until this is pointed out to him. When Charlie was younger, I would have been alarmed at his still, at the age of 9, not knowing the difference between “i” and “l.” More important to me now is that he takes pleasure in reading the letters out loud, in a pre-reading skill: Charlie can identify several sight words, but he cannot yet read as far as looking at a page in a book and pronouncing the words—but this will come.

While life with autism is not easy—-as I have sought to convey in chronicling almost two years of our life raising our autistic son Charlie on my blog, Autismland—neither is it some dreadful phenomenon. “The autistic kids keep on coming, and coming and coming. They will bankrupt school systems, public services, and social services,” writes Dachel towards the end of her op-ed in language that suggests a vast horde of autistic children descending upon us and eating up all manner of resources, economic, educational, and otherwise. It is precisely this kind of alarmist statement, of a seemingly infinite number of disabled children draining our resources and, indeed, our future that is characteristic of advocates of a mercury-autism connection.

Dachel structures her op-ed in the usual way that advocates of the mercury-autism theory (such as David Kirby and Dan Olmsted) use: After briefly mentioning an opposing theory in the opening paragraphs, Dachel attempts to show the theory’s “illogical” nature, incorrectness and just plain falseness by presenting an array of statistics and other numbers from an array of sources, and by appealing to our common sense: Surely we are not so….stupid…..not to see the evidence before our eyes, so many—-an epidemic—-of autistic children.

Thus, in her opening paragraph Dachel mentions the better diagnosis theory:

About six months ago I wrote an OpEd piece called “The Really Big Lie About Autism” in which I described the persistent yet illogical claim that all the autistic kids filling speech therapy sessions, classrooms, and even whole schools, are the result of “better diagnosing and greater awareness” on the part of doctors.

She then cites the CDC’s recently released figures on the increased prevalence rate in autism (1 in 150; 1 in 94 in New Jersey) and singles out a few “experts” (Dr. Marshalyn Yeargin-Allsopp, chief of the CDC’s developmental-disabilities program at the National Center on Birth Defects and Developmental Disabilities; Dr. Paul Offit, chief of infectious diseases at Children’s Hospital of Philadelphia; Dr. Fred Volkmar, director of the Yale Autism Center). Dachel gives the appearance of showing the lie in their arguments by noting that, while the DSM-IV definition of autism was expanded in 1994, the 1990s were “also the decade of the dramatic increase in the number of mercury-containing vaccinations in the childhood schedule” (she none too accurately conflates a change made in the diagnostic definition of autism in one year, and one almost halfway through a decade, with the time period of the entire decade). Statistics of rising numbers of children diagnosed with autism from several states (Texas, New Jersey, New Hampshire, Michigan) are cited as “evidence.”

Dachel closes her op-ed by stating her main point in simple and clear language, the use of the device of the rhetorical question:

The truth will come out in the end, but the question is, will it be our end as well?

By “the truth,” Dachel refers to her own definition of autism as an “environmental neurological disorder” whose rising prevalence we ought to be alarmed by. A rhetorical question “affirm[s] or den[ies] a point strongly by asking it as a question” (see the Forest of Rhetoric); Dachel suggests that the notion that “autistic children haven’t always been with us or called something else” will most definitely “be our end as well” unless we wake up from the “big lie about autism” and recognize the truth.

Characterizing autism as some sort of environmentally-rooted, toxic disease, is to misrepresent what autism is by boiling it down to some kind of condition caused by a single toxic agent. Dachel draws on a predictable rhetorical structure to make and to support her claims. For the truth is already with us, in the autistic persons, of children and adults who are here and now with us, not through some theory based on some chance, and not entirely credible, correlations.

POSTED IN: Environment, Rhetoric, Vaccines

145 opinions for The truth about autism: It’s not toxic

  • Kev
    Feb 26, 2007 at 5:05 am

    Bravo Kristina…excellent piece.

  • Caroline
    Feb 26, 2007 at 10:40 am

    I will miss reading about Charlie, a wonderful boy. It is from your writing about Charlie and his great days that so many others can benefit. Could you please in some way, write in detail about what has helped him? the’coping mechanisms’, the teaching strategies, what you and your husband and Charlie believe works and dosnt work in the world of education and therapy? this is more helpful to so many out there who can only dream of hearing their child say ‘Mom’ in any pronunciation, or read the letters on a sign out loud, go to a mall with grandparents without a parent or therapist shadowing, having their child eat at whole foods at Columbus Circle (talk about triumph over sensory issues!), eating food other than baby food and PLAY THE PIANO. also, how to teach a child how to ride a bike. so many things that you could teach other families. It would have to be in detail, but a much more important book than ‘let me hear your voice’.
    Not every child presents with the characteristics of ASD at birth or even in their first 3 years of life. many are ‘related’ chatty children with no sensory issues - in other words, typically developing - and then boom! regression. parents are only looking for answers, but the best answers you can provide is the details of what has helped Charlie to thrive and enjoy life.

  • KC'sMommy
    Feb 26, 2007 at 11:02 am

    I too will miss reading about Charlie, please give us updates about Charlie on Autism Vox?

    Terrific post Kristina!

  • mcewen
    Feb 26, 2007 at 12:15 pm

    You can check up on the thrills and spills of Charlie at Autismland - - the link is above [5th paragraph down]
    Cheers

  • Kristina Chew, PhD
    Feb 26, 2007 at 12:54 pm

    Caroline, thank you (and thanks everybody, of course)—-this suggestion is great!

  • Caroline
    Feb 26, 2007 at 12:57 pm

    Thank you, I think if I am reading this correctly, that Kristina is no longer going to write about the day-to-day aspects of life at Autismland but rather comment on issues surrounding autism, etc. here. maybe I misread the post.

    I find the writing on Autismland so compelling and I stand by the suggestion that detailed information about what you see as successful strategies and how best to teach and educate individuals with difficulties in communication is what is needed now.

  • Kristina Chew, PhD
    Feb 26, 2007 at 1:03 pm

    Caroline: Yes, I am no longer writing on Autismland about Charlie’s day to day to life—–but I am certainly going to continue here. I really like your suggestion for writing practically about strategies — how we taught Charlie to eat out in restaurants for instance. I have decided to start a new category of posts about just this topic of “Teaching Strategies.”

    I also do comment here on larger “issues” about autism (the prevalence rate, genetics, etc.) but I have been wanting to change things on Autism Vox a bit in light of not writing on Autismland any more, and your suggestion is really, really helpful.

  • Leila
    Feb 26, 2007 at 2:51 pm

    I feel bad for the mercury parents. It must be really painful to believe so strongly that their children were poisoned. I don’t think they’ll ever change their minds, unless the geneticists find a smoking gun, or the exact genes involved in autism, and explain the process of how the condition develops.

    In my opinion, the truth is all in the genes. However I’m open-minded to accept any other cause(s) for autism, as long as it is 100% proven. I’d even accept that there are some cases where the child developed autism after a bad reaction to a vaccine (those kids that get encephalitis, seizures or other serious side effects right after being vaccinated and immediately regress). But that was not the case for my son. He never had bad reactions to vaccines, not even a fever. Some of his symptoms of autism were present from birth.

  • Joseph
    Feb 26, 2007 at 4:04 pm

    Oh, another one of those arguments along the lines of “there has been a real rise in autism because I say so.”

    I can’t help but wonder what Ms. Dachel’s son thinks about his mom’s articles. I have a pretty good idea though.

  • Tim Kasemodel
    Feb 26, 2007 at 7:32 pm

    You say the “truth is already with us…..and adults that are already here with use now…”

    I think that is Ms. Dachel point - that with one in 150 adults, let say in a town of 3000 like mine, we should have 20 adults with varying degrees of autism. I know in my town for sure, there may be one or two….How could I know? HOW COULD YOU KNOW????

    Leila, - a few comments. Thimerosal, a mutagen, can and has been shown in peer reviewed studies to cause fragmented DNA and alter the expression of genetic enzymes - no dispute from anyone on that….

    100% proof? Wow, that is a tall order….. even the CDC will not give 100% reassurance that thimerosal is safe - that is even spelled out in the 2004 IOM reprt that supposedly clears thimerosal as causative. The IOM stated very clearly that they could not rule out “the possibility that vaccines contribute to autism in some small subset or unusual circumstance”.

    That does not sound like 100% proof to me.

    Joseph, Ms. Dachel does not say autism is an epidemic just because she wants to….. she reads, does research, spends some time on the issue and works hard to understand all the information. Many of us do, and if I thought you had an open mind I would share with you the information that supports our belief - but it appears I would be wasting my time.

    Maybe I believe the research pointing to the fact thimerosal is causative is because I have my own son, my own “test subject” if you will. Yes he is wonderful (before you attack my label) and unique. He was however, born without what you would call “autism”. After we saw taht many of his physical ailments coincided with the results of much of the research on thimerosal, and we treated his ailments as mercury poisoning, we saw progress. This process has led us to the conclusion that treating our son medically, along with love and therapy, we can help him to lead a more fullfilling life. This sure beats when he had the constant runs due to gut disbiosis, and smearing his poop all over the walls everyday, crying in pain from tummy aches or headaches, flapping his hands and walking on his tip toes, not feeling pain, or hot or cold………

    Yes - healing those things are what can happen if a shift in paradigm takes place. If your children never experienced these medical ailments, I do not think you have the right to attack Ms Dachel for what she believes, I think you could be grateful for a healthy child, and let Ms Dachel do her own thing.

  • Kristina Chew, PhD
    Feb 26, 2007 at 8:58 pm

    Thank you so much for commenting here, Mr. Kasemodel. I hope that you and Ms. Dachel might read some posts that I have written concerning there not being an “epidemic” of autism (such as this post).

    Yes, there are many autistic adults with us now, in our communities.

    Thank you gain for sharing about your son here.

  • Joseph
    Feb 26, 2007 at 9:22 pm

    “Ms. Dachel does not say autism is an epidemic just because she wants to….. she reads, does research, spends some time on the issue and works hard to understand all the information”

    You wouldn’t know it by reading an article where all she does is make the assertion that autism rates cannot be accounted for through “better diagnosis” only (a known and common straw-man). She provides absolutely no evidence that would allow us to conclude that the administrative rise in autism diagnoses is biological as opposed to social.

    I have made the opposite argument, and I do believe the burden of proof is on those who use the word “epidemic”, but I do provide evidence to justify my beliefs:

    http://autismnaturalvariation.blogspot.com/2006/08/no-autism-epidemic-update.html

    I also recommend Gernsbacher et al (”Three reasons…”) and I hear Grinker’s book provides good evidence.

  • Marcie
    Feb 26, 2007 at 10:05 pm

    When I told my mother that I have Asperger’s Syndrome, her only response was that I wasn’t autistic as a child. My response to her was, in part, “You always knew as I was weird, now you know why”. The most prime years for me to have been diagnosed were before Asperger’s was even in the DSM. Maybe it would have been better and I could have been around kids like me, if we had known - but then again maybe it’s better for me not to have been labeled. It’s sad that all our progress has enabled us to do is label diversity… I worry about the kids of the parents who are so fixed on curing them. How do they perceive their parents opinion of them?

  • MARIA LUJAN
    Feb 26, 2007 at 10:58 pm

    Hi Kristina
    You said
    “Characterizing autism as some sort of environmentally-rooted, toxic disease, is to misrepresent what autism is by boiling it down to some kind of condition caused by a single toxic agent…For the truth is already with us, in the autistic persons, of children and adults who are here and now with us, not through some theory based on some chance, and not entirely credible, correlations”.
    For many of us, also parents of autistic children, I assure you that the view is nothing so simple as “toxic disease”.
    Unfortunately we (I) found , surprisingly and very unexpectedly, that in some aspects the theories were not such and in some others aspects the correlations were confirmed in many clinical aspects of my child.
    And for me , also, the words CAUSE(s)/CURE (s) are not in my vocabulary,my mind or my heart related to being the best advocate for the improved health of my autistic child.

  • Kristina Chew, PhD
    Feb 26, 2007 at 11:13 pm

    María, you always remind me—alert me—to the complexity of things. I’m grateful to the nuance and care with which you articulate your position, and describe your son and his health. Thanks for helping me to keep on thinking and questioning and learning.

  • Bernd Lichters
    Feb 27, 2007 at 11:38 am

    The article Dr. Kristina Chew wrote on Anne Dachel is very disappointing to me.
    The problem, as I see it, is a combination of genetical prior problems in the environment, maybe a couple of generations before, in our case Bethelehem Steel Baltimore, plus the environment now, and therefor that certain babies, newborns, are more at risk with combination vacinations plus the thimerosal component (almost 50% mercury). Very interesting to know, that the new law in California in 1986 with the changes of vaccinating babies, instead after 2 years of age, without letting us know the facts about the components in DPT, etc. My son was born in 1987 in LA. and of course was diagnose din 1990, when suddenly a major problem devoloped in California.
    Dr. Kristina Chew, I come from a family I have medical professionals in nmy family for a long time and the pharma interest groups is as old as the pharma industry exists. This is a very old head. I think you simplified and kind of smeared Anne Dachel’s arguments, instead of having some real arguments yourselve.
    My final word is, that I love my son over everything in the world and I do look at every argument there is. But I am not ignorant to the environmental facts hitting this country, a lot of other countries and the world.
    I have one question for Dr. Chew: Are you happy they way our society in the USA, India and China and their governments are handeling the environmental problems facing this world?
    Please let me know.

  • Kristina Chew, PhD
    Feb 27, 2007 at 12:02 pm

    Mr Lichters,

    Thank you so much for commenting here and for writing about your son. Do you still live in California?

    Regarding your comment–”I think you simplified and kind of smeared Anne Dachel’s arguments, instead of having some real arguments yourselve.”: There is a “simplication” of arguments for how a number of factors have worked in concert—including cultural and epistemiological factors and changes in our American society as a whole to produce a higher prevalence rate of autism in children today; such occurs at the beginning of Ms. Dachel’s own op-ed.

    Just as our and other societies continue to advance and to learn from our past response to environmental issues, so do I hope that our society can continue to advance in its understanding about autism and about autistic persons.

    Thank you again.

  • Twyla Ramos
    Feb 27, 2007 at 12:45 pm

    I don’t really understand how the reality of a walk in the snow with your autistic son is related to the possible causes and treatments for autism. As a mom of an autistic 14-year-old, I experience the reality of a loving relationship with my wonderful but severely handicapped son on a daily basis. That certainly is an important complex essential reality. But that does not change the fact that I know parents of children who have recovered from autism by means of chelation to remove heavy metals, primarily mercury. I have no idea what percentage of autism is caused by exposure to mercury. But it certainly is an interesting subject for research. I can understand why the CDC, FDA, APA, and pharma companies strongly deny any possible link between autism and mercury. But I can’t understand why parents without these ties are adamantly against this hypothesis. I love my son as he is, but I don’t know how he will get by in this world when my husband and I are gone. I do my best to help him to function better. We have not tried chelation yet, for various reasons, but it is certainly something we are considering. My son received a vaccination containing the preservative thimerosal (which is almost 50% mercury) on the day that he was born, and continued receiving vaccines with thimerosal every few months throughout his infancy and early childhood. There is no question that mercury even in small quantities is extremely toxic. Vaccines are not the only source of mercury, which is increasing in our environment and is present in dental amalgams. To me it is very credible that mercury could cause autism. Historical review of cases of exposure to mercury show similar symptoms such as loss of speech, GI damage, immune disfunction including allergies, hand flapping, rocking, siezures, and more. Autism may actually be “autisms”. It is defined by symptoms, and there may be various causes. But I cannot understand hostility towards those who are fighting for further research on what may be a significant cause of many cases: mercury. I believe there is no question that the rate of autism has increased significantly. This would indicate that genetics alone is not the cause. I also have heard many very credible accounts of autistic children improving through biomedical treatments. This also indicates that genetics alone is not the cause, even though it can be hard to find the particular combination of treatments that work for a particular child. Instead, autism is most likely a result of genetic susceptibility to environimental causes and involves not only the brain but also digestive disorder, inflammation, and disruption of various chemical processes in the body, all of which impact the brain’s function.

  • Kristina Chew, PhD
    Feb 27, 2007 at 1:01 pm

    Thanks for writing here, Ms. Ramos; I know many families who have pursued biomedical remedies for their children and am familiar with the theories regarding mercury and a “genetic predisposition to autism” that you mention.

    The truth about autism is our autistic children themselves. There is a tendency to focus a great deal on causes, cures, and treatments with the result that one can sometimes not “see” the child in front of oneself; to try to understand autism via theories such as the mercury-vaccine one. When I try to understand about “what autism is,” I look to my son and the experience of living with him every day.

  • Evelyn Carter-Doucete
    Feb 27, 2007 at 4:39 pm

    As the parent of three boys, one of whom is autistic, I would have liked to have had the option of receiving vaccinations without thimerasol. When my autistic son was three and needed seven fillings, I chose not to get the silver fillings because of the mercury content, and this was over two years before he was diagnosed with autism. At this point we just knew he had a speech impairment, and had some quirky characteristics. This was even before the whole outcry about mercury came out. I, however, knew that I did not want that in my child’s mouth. Why would I want it injected into my child? I don’t even care if it does cause autism. I would have happily paid more money for separate vaccinations, just like I did for the non-mercury fillings. I’m angry for not having the choice and for holding all my children down while they were stuck with these vaccines.

  • Marcie
    Feb 27, 2007 at 9:44 pm

    Bernd Lichters said:”Are you happy they way our society in the USA, India and China and their governments are handeling the environmental problems facing this world?”

    Are we talking about mercury vacinations or environmental pollution (air, water, etc)?

    I find the hypothesis about the environment very interesting, as I work for my state’s deparment of environmental quality. I’m interested in anything that can help us put stricter laws on facilites. However, every article I’ve read concerning autism and the enviroment starts off by saying “we have good reason to believe the environment is the problem” and goes on about general problems of pollution. If you’ve found anything conclusive, please tell me.

  • Rochelle
    Feb 28, 2007 at 12:18 am

    I’d like to see citations to those studies, also. Apparently, there’s some smoking gun no one seems to be able to locate.

  • Evelyn Carter-Doucete
    Feb 28, 2007 at 1:30 am

    Here’s some conclusions, mercury is not good, pollution in air and water, not good. What is the argument about? Does these things cause autism, I don’t know, but why wouldn’t you want cleaner air, water, vaccinations? Do we really need a smoking gun before we go about getting rid of toxins? For instance, for those who don’t believe thimerosal causes autism, why is it still o.k. for them to give your children mercury? I will never understand this. Explain it to me.

  • Kristina Chew, PhD
    Feb 28, 2007 at 1:40 am

    No argument, indeed, as far as the “not good”; it’s the vaccine or mercury or other “toxin” link with autism that is not established. But I think it is clear that parents seek reasons for what happens to their children.

  • Kassiane
    Feb 28, 2007 at 1:42 am

    no one ever said it’s a good thing to give kids mercury.

    Just that shots don’t cause autism.

    Big difference there.

    Unless you have a source, putting words in people’s mouths is not just rude. In the public arena it’s an expensive legal problem.

  • Evelyn Carter-Doucete
    Feb 28, 2007 at 1:52 am

    I am sincerely not trying to be rude, I am really trying to understand the debate. I am not being facetious when I say explain it to me, I am trying to understand all sides of this. That is why I am here.

  • Kristina Chew, PhD
    Feb 28, 2007 at 2:11 am

    I am very glad that you’re here, Evelyn—-I think many of us here (if I can speak for others) do not think that mercury or vaccines causes autism; I think we feel some frustration at the amount of media attention given to vaccines and mercury and to the causation question more generally—-and there are so many pressing needs for educating children and providing services for adults who need them.

  • Evelyn Carter-Doucete
    Feb 28, 2007 at 2:28 am

    I agree with you. For the most part, I spend much more time thinking about my child’s education and his future, than why he has autism.I sometimes get caught up in the why’s(like everyone, I’m sure) but I spend way more time dealing with the day to day things. I really appreciate all the information that is out there.

  • Kristina Chew, PhD
    Feb 28, 2007 at 2:31 am

    And I really appreciate being able to be in contact with parents and autistic persons here—so much to learn. If I may ask—how old is your son? Charlie is 9 3/4 years old.

  • Evelyn Carter-Doucete
    Feb 28, 2007 at 2:46 am

    My son is 7, will be 8 in June. he wasn’t diagonosed until almost 6.

  • Evelyn Carter-Doucete
    Feb 28, 2007 at 2:50 am

    I also have a 9 year old son ( an a 5 year old son). The best “treatment” for my 7 year old that money can buy!

  • Kristina Chew, PhD
    Feb 28, 2007 at 3:02 am

    Charlie is an only child—our school district is trying to start a “buddy” program in which he would be paired with another child. I’m very hopeful of what it will mean for Charlie to have a “buddy”—he likes to watch and observe other children, and is very hesitant (an understatement) about interacting.

  • Evelyn Carter-Doucete
    Feb 28, 2007 at 3:22 am

    My son would rather play by himself, but his brothers ‘force’ him to interact more than he probably would otherwise, even if it’s to annoy him. It’s probably made him more tolerant of being around others, as it is never quiet here! He has an expressive and receptive speech disorder, so that makes him hesitant to play with others. He is mainstreamed in a 2nd grade class right now, with an aide in the morning. It’s going really well, he’s even initiated (a couple of times) play with other kids. Academically he’s probably at the bottom of the class because of the learning disability, but we are happy with his progress.
    it’s nice to hear that your school districts is adding more things. I know at my son’s school there are more kids every year entering with autism, so they are trying to figure out what to do. In a school of less than 500, there are 5 autistic kids (that I know of).

  • Twyla Ramos
    Feb 28, 2007 at 3:25 am

    I totally agree with Evelyn Carter-Doucete when she says that we should remove toxins such as mercury even if we don’t have irrefutable proof of a link with autism. Why is the CDC still recommending flu shots containing thimerosal for babies, children and pregnant women? Why is the WHO still exporting vaccines containing thimerosal? Do we need more proof that a known neurotoxin is bad before we stop injecting it into babies? Isn’t this backwards? If there is any doubt about safety, shouldn’t we just remove it?

    There is a simple alternative, as vaccines packaged individually do not need a preservative. Thimerosal is used for multi-dose vials to protect against contamination when the vial is punctured multiple times. The single dose vials cost a couple of dollars more — a small price to pay.

    I would also like to say that I often feel that some people seem to be saying that we should not even research mercury in relation to autism until we have definitive proof of causation. How can we ever learn anything new if we don’t study it until after it is proven?

    As far as evidence of a link, read David Kirby’s book Evidence of Harm.

    As far as education and services — of course they are very important. Nothing is mutually exclusive here — education, therapies, love, fun, recreation, and biomedical treatments all play a role. But some kids who have benefited from treatments such as detoxification need a lot less services than they would without detox, and are able to integrate into regular classrooms.

    There is a school of thought that autism is just a different lifestyle that should be respected. This may be the case for some on the milder end of the spectrum, but it should be remembered that some autistic people are very unhappy, whether due to an inability to communicate or due to painful medical issues, sensory issues, etc. And some autistics have a profound level of difficulty with basic life skills.

    Looking for causes is not just out of a desire to find a reason “why” or to find a scapegoat. It is out of a desire to improve the lives of our children.

  • Evelyn Carter-Doucete
    Feb 28, 2007 at 3:26 am

    Thank you for chatting with me, I’ll check back here again this week.

  • Twyla Ramos
    Feb 28, 2007 at 4:09 am

    While you two were starting a nice chat about your kids, I was typing my rant about mercury, and by the time I sent it, it was totally out of place! It’s not that I don’t appreciate conversations about children, truly…

  • Kassiane
    Feb 28, 2007 at 4:43 am

    David Kirby….frankly…has proven himself to be a moron who can barely research (sort of. If trolling internet groups counts as research) and doesn’t understand over 90% of the words he throws around. His so called debate, sponsered by mothers on a mission for hysteria, California chapter, proved that.

    Read his stuff from Outworld. The gay activist zine. Yep, he’s flaming. He said, about 10 years ago, that hate rhetoric leads to the attack and killing of gays.

    Oh wait. That applies to autistics too. And here he is calling people like me toxic waste dumps and making assumptions about our abilities to excrete things. There are real exphos (is that the term he used?) disorders. Wilson’s disease (copper) and hemochromatosis (iron). Both way less pervasive elements than mercury, and less toxic. People die without treatment for both of those. People die a lot faster-as in, would die before they got their shots-if they can’t excrete mercury.

    BTW, they can’t find a half life on thimerosol. The molecule is bound such that the mercury is inert, and the whole thing is gone thanks to the good ol’liver and kidneys before they can get samples. THAT is how short the half life is. I’d worry about the crap in the lollypop from the doctor before I’d worry about the shot itself.

    Oh damn, I went and got all sciency again. Sorry Kristina…

  • Steve
    Feb 28, 2007 at 11:46 am

    First I need to ask Kassiane, and perhaps even Dr. Chew: How much research have you done in the field of genetics, toxicology and environmental polutants/toxins? If you have not done any studies in that area then you really have no leg to stand on to exclude the possible link between thimerosal and autism (or as I like to refer to it as mercury poisoning).
    Everyone always asks for the studies that conclusively link thimerosal to ASD’s, but I always ask for the studies that don’t. (At least the ones that are not Pharmaceutical/CDC backed.) Therefore you can never exclude that link as a possibility.
    Additionally, try to remember, and I know this is difficult for a number of you, we are not saying that vaccinations/thimerosal is the lone culprit. It is a significant contributor. And if thimerosal has no link and is so safe then why don’t we just remove it from all vaccines? The technology exists to remove it or not use it at all but so many entities fight to keep it there and it makes no sense at all.
    Being the father of two children who have recovered from mercury poisoning I can say I have done a lot of studying in every possible area over the past four years and do believe there is a link between the mercury containing preservative and ASD’s. But I also believe that the toxins that exist in our every day life contribute as well. So if we have the ability to remove one of the factors don’t you think we should?
    And one final question Dr Chew: Have you attempted any form of treatment (ie: chelation) with your child?

  • Kristina Chew, PhD
    Feb 28, 2007 at 12:59 pm

    Dear Steve, After a lot of research and discussion; speaking to a DAN practitioner and attending DAN, we chose not to chelate our son, who has been doing really well.

  • Kassiane
    Feb 28, 2007 at 3:09 pm

    What’s YOUR background? I have a QBE. If it’s good enough for the neurologists, geneticists, and toxicologist I’ve seen, it’s good enough.

  • Rochelle
    Feb 28, 2007 at 6:37 pm

    It’s so frustrating to hear about all this “scholarly research” supporting claims between autism and mercury, but I’ve yet to see one citation. Not one study is mentioned in post after post after post. And, when the CDC actually presents and publishes scholarly research, it’s dismissed as inconclusive and ethically biased? For some reason, I’m supposed to trust the ethos or credibility of some parents who’ve “done research” over an entire agency of educated biologists, chemists, environmental scientists, and physiologists? For some reason the doctors have to prove *their* ethics and credibility? I love how the conspiracy theories always challenge the ethics of the doctors and scientists, but never question the ethics of the mercury, chelation “experts.”

    Before I start injecting my son with needles full of some crap I can’t pronounce based on some “science” that cannot be substantiated and turning my son’s peaceful, angelic existence into some nightmarish hell of detoxification all in an attempt to “rid” him of the poisoning called “autism,” I would like to see some actual *proof.* I’d like some logos. I would like to have something more than a bunch of pathos-based arguments based on conceptions of ab/normal. I would like more than just a couple of antidotal stories from parents of their children who’ve “recovered.”

    I’m still waiting for something more than “studies show.” Something more than: Autism = toxins. Again, I want something more than just “studies show.”

  • Marcie
    Feb 28, 2007 at 8:18 pm

    “Here’s some conclusions, mercury is not good, pollution in air and water, not good. What is the argument about? Does these things cause autism, I don’t know, but why wouldn’t you want cleaner air, water, vaccinations? Do we really need a smoking gun before we go about getting rid of toxins? For instance, for those who don’t believe thimerosal causes autism, why is it still o.k. for them to give your children mercury? I will never understand this. Explain it to me.”

    A note about environmental laws: Companies who profit from polluting will do everything they can to fight stricter laws. I don’t just work for the department of environmental quality because its a job. I’ve always wanted to do scientific work and help the environment. But there’s a lot of red tape, lawyers, lobbyists, etc that stand in the way.

    But as for as autism goes, all the environmental theory has to go on is “pollution is bad”. We know a few things for sure, like many substances cause cancer. But even then, when you release these substances into the environment, you cann’t say that x pollution caused the cancer in y person. There are millions of variables that a person goes through that have nothing to do with pollution. But it hasn’t even been shown - or even tested for, as far as I know (I’ve read quite a bit on the history of environmental laws) - that pollutants cause autism.

    As far as mercury in vaccines go, I don’t have any opinion, but I wish that’d just use the single doses and take it out so we can stop all the fighting over it!

    Marcie
    Physicist and anthropologist by education
    Environmental Scientist by trade

  • Kristina Chew, PhD
    Feb 28, 2007 at 8:31 pm

    Twyla: Kids are always in the conversation when the subject is autism, for me at least………thanks for writing again.

    Marcie, I agree! Enough else to talk about.

  • Marcie
    Feb 28, 2007 at 9:29 pm

    P.S. Kassianne, out of curiousity, what’s a QBE?

  • Steve
    Feb 28, 2007 at 10:33 pm

    First Dr. Chew thank you for your answer. I am glad to hear that your son is doing better even though it is not through chelation. You are doing what you feel is best for your son and we have to realize that it is all about our children and what is best for them.
    We chose to chelate our two sons and saw incredible results with them. Even to this day we have people asking us what we did for our children because they look and act so normal. These same people tell us that they would have pegged our boys as autistic.
    So maybe we need to step back for a moment and think about how we classify our children. Maybe my kids were never autistic, but that is the label the so called experts wanted to place on my sons. I would in all actuality label my son’s as mercury poisoned.
    Which in the end would lead us right back to vaccinations. Through our own research there is really no other place my boys could have gotten mercury. Every single shot my oldest son received in the first year of his life contained thimerosal.
    So now Kassianne, my background is in aviation. I got a Bachelors in History and a minor in Mathematics. I am currently going through school once again studying genetics, toxicology and dabbling in environmental studies. If you need more I can continue. I am currently qualified in 10 (different) aircraft, I speak four languages and play two instruments. I take it upon myself to continually educate and to ask a lot of questions before I believe.
    As for QBE, I to am ‘Quite a Big Egotist’as well. (a quick hint, that is called sarcasm)
    Now as for Rochelle, if you are so tired of hearing about studies and nobody tells you what they are, then go look for them yourself. They are out there and pretty easy to find. It just sounds like to me you don’t want to hear the truth. I’m sorry, you don’t want to hear what could possibly be true. You would be amazed what you can find and learn.
    In fact what I have learned in the last couple of years is that the underlying medical condition of autism is neuroinflammatory disease. In a study conducted at John Hopkins University, brain tissue from deceased autistic patients was examined. The tissue showed an active neuroinflammatory process and marked activation of microglia cells. Neuroinflammatory disease is synonymous with an activation of microglia cells.
    A study done at the University of Washington showed that baby primates exposed to injected thimerosal (50 percent mercury), at a rate equal to the 1990s childhood vaccine schedule, retained twice as much inorganic mercury in their brains as primates exposed to equal amounts of ingested methylmercury. We know from autometallographic determination that inorganic mercury present in the brain, following the dealkylation of organic mercury, is the toxic agent responsible for changes in the microglial population and leads to neuroinflammation.
    Recently it was shown that in more than 250 examined patients, atypical urinary porphyrins were almost three times higher in autistic patients than controls. Porphyrins are precursors to heme, the oxygen-carrying component of blood. Mercury inhibits the conversion of porphyrins to heme. When the patients were treated to remove mercury, urinary porphyrins returned to normal levels.
    In a study done at the University of Arkansas, autistic children were found to have significantly lower levels of the antioxidant glutathione. Glutathione is the major antioxidant needed for the elimination of mercury at the cellular level. This may explain why some children are more severely affected by thimerosal in vaccines than others.
    While all the government-conducted epidemiological (statistical) studies show no link between thimerosal and autism, the clinical studies examining brain tissue, blood, urine and human cells show a completely different picture.
    But still, if this is not enough, please let me know and I’m sure I can find some studies for you.

  • Kristina Chew, PhD
    Feb 28, 2007 at 10:36 pm

    Thanks Steve and good to hear about your children. I have heard of the studies and treatments that you mention.

    I believe Kassiane meant this by QBE.

  • zilari
    Mar 1, 2007 at 12:09 am

    I can’t help but think of the term “cargo cult” in relation to all this mercury-autism talk.

    http://en.wikipedia.org/wiki/Cargo_cult

    Of particular interest: “And from time to time, the term “cargo cult” is invoked as an English language idiom, to mean any group of people who imitate the superficial exterior of a process or system without having any understanding of the underlying substance.”

  • Kassiane
    Mar 1, 2007 at 4:44 am

    Kristina would be the correct one.

    Qualified By Experience.

    Been autistic 24 years. Seen actual toxicologists, neurologists, geneticists. Asked questions. Lots of questions. Questions that surprised them. Worked with and been friends with and just BEEN with autistic people. Seen the fads come and go a LONG time.

    I read neurology journals for fun. They’re really quite interesting and frankly I’m more interested in curing epilepsy than in curing autism. Epilepsy kills people (but certainly you know all about SUDEP! Bet you haven’t been dead for 60 seconds though, or had a SUDEP scare for a birthday present. QBE…). Autism doesn’t. The whacky case studies are also just really fascinating, like the kid who had seizures looking at round objects & would do it on purpose.

    Oh and I guess a photographic memory counts in my qualifications. It annoys people who like to ramble about how many dozens of airplanes they’re qualified in, but it’s a nice tool, as is my testing acumen.

    Also most of a degree in special ed, and various coaching credentials that I won’t bore people with.

  • Steve
    Mar 1, 2007 at 8:02 am

    Well Kassiane I guess that would make you the end all be all of experts. And having photographic memory, well I guess you got me there too. I only have sketch art memory.
    The thing is, don’t denigrate those whose have shown success with there children and try to help others (which it appears you feel you must do). We have helped over 20 families in the last four years and every one of them have seen success in their treatments.
    And finally, I think your photographic memory is out of film. I only said 10 aircraft. The last time I checked you needed at least 12 to constitute a dozen.
    Dr. Chew thank you once again for your understanding.

  • Twyla Ramos
    Mar 1, 2007 at 12:40 pm

    Thank you, Steve, for all the information you provided.

    As far as studies, as Steve mentioned there actually are a lot of studies out there. But we who believe in the autism-mercury connection wish there were more studies. Unfortunately many of the agencies that should be researching this are ignoring this hypothesis. Many of these agencies have a vested interest in ignoring this hypothesis, except for doing number-crunching biased epidemiology studies where the statistics are manipulated until the preferred outcome is achieved.

    And there is the circular argument of “We don’t believe it because it hasn’t been proven because we’re not studying it because we don’t believe it because it hasn’t been proven because we’re not studying it…”

    What parents witness is discounted as “anectdotal” and parents are told that we don’t understand science, and this is used as an excuse for agencies to not do the scientific studies that are needed.

    It’s as if we told Gallileo “Sure you thought you saw XYZ in your telescope, but this hasn’t been validated in a large peer reviewed study so your observations have no significance and we’re not listening.”

    Moreover, scientists do not have a monopoly on the ability to observe the effects of a treatment and form intelligent opinions.

    One more comment: We should be able to discuss these issues in a rational manner withoug hurling a bunch of personal attacks.

    I respect anyone’s right to believe or disbelieve this theory and to do what they believe is right for their children. None of us have been handed the Truth on a stone plaque — we are all making our way through uncertainties in relatively uncharted territory.

    My impression of the individuals in groups such as Safe Minds and NAA is that they are very committed to children’s well-being. Personal attacks on those who believe in the mercury-autism connection show a personal bias on the part of the attacker. Listen and learn, don’t let your thinking be clouded by emotional issues.

  • Steve
    Mar 1, 2007 at 1:53 pm

    Thank you for what you are doing Twyla.

  • Kristina Chew, PhD
    Mar 1, 2007 at 3:21 pm

    And I hope we can focus on the educational and oher needs of autistic children and persons now and let the question of “cause” remain the subject of study that it is.

  • Kassiane
    Mar 1, 2007 at 4:26 pm

    Hey airplane dude:

    I knew you said 10. But as you went on and on about them they seemed as important as all of them.

    Attacking autistic people is obnoxious. Is that how you want your child treated? Because the way you treat autistic adults now is exactly how people are going to learn it’s acceptable to treat your child later.

    Maybe neurotypicality is the condition that needs curing. Perhaps some neurotypicals have a neurotoxic process going on. Makes sense to me, given their abberant behavior…

  • Steve
    Mar 1, 2007 at 6:12 pm

    Well Kassiane, I am sorry that you feel you have been attacked. But I first have to tell you that when I see one person attacking another just based on beliefs, normally I will come to the aid of the person recieving the unwarranted attack.
    Additionally you had asked what my background was and when I answered you,. you decided to take it upon yourself to attack the information I provided. And in these type of conversations I believe you need to be rather accurate when you attempt to make points. I personally did not know that two half sentences was a definition of going on and on. (Do you see how I handled that particular fact)
    Once again, I am sorry that you felt attacked. But the underlying issue here is the children and those people, such as yourself, that have been labeled autistic.
    I do not love my children any less just because I search for answers as to why they degenerated into an autistic like state after their vaccinations. If it is truly genetic, then how were they able to come out of that state through chelation?
    Out of curiosity, have you ever done any internal allergy tests? Have you ever attempted chelation? I would say these are things that could be looked into. We have a couple autistic (adult) friends who have seen great improvements since they started chelating just a couple of years ago.
    Just remember, do unto others as you would have them do unto you. Sarcasm is my defense mechanism when I am attacked, and I will continue to answer you in this way if you continue to treat me that way.
    Dr. Chew, keep on doing what you think is best for your son and thank you for your patience with us.

  • Kristina Chew, PhD
    Mar 1, 2007 at 6:19 pm

    I am glad that this discussion is going on here and hope it can remain as cordial as possible. Thanks for mentioning my son who is doing superb—-I used to write about him everyday on Autismland and have stopped because a part of the story of that part of his life seems to have come to a fine close. Staying in conversation with numerous viewpoints always helps me.

    My son is growing up and I look forward to when he will join in, too.

  • Steve
    Mar 1, 2007 at 6:27 pm

    Well Dr. Chew, it is great to hear that. I can tell you that both my sons are doing great.
    My oldest (who was the most affected) who we were told would never be in a main stream classroom, never be able to play team sports, never be able to memorize things longer than a couple words is doing awesome. He is getting straight A’s in his first grade class, he has participated in many team sports and done well. He is memorizing things that I think I would have had trouble with at his age. And this last weekend was a pure benchmark. He learned how to ride his bike without training wheels on Saturday, and then on Sunday he learned how to roller skate. To see him on his bike as he screamed to me across the parking lot, ‘I’m doing it!’ Brought me nearly to tears. Knowing that only four years ago the doctors told us that his body was on the verge of collapse (and death)
    His younger brother is incredible as well. He is an accomplished artist in his mind and has written three ten page books based on Sponge Bob.
    That,.is what this is all about.
    Have a wonderful evening.

  • Marcie
    Mar 1, 2007 at 9:24 pm

    “I would in all
    actuality label my son’s as mercury poisoned.”

    We all go with what we know. I know my parents and a lot of other people on the spectrum. There’s only one person I know of who can’t see autism in her family. There have been studies showing that autism runs in families. Do you doubt that it’s even partially genetic? A recent study found some of the contributing genes. And Simon Baron-Cohen’s Associative Mating theory makes evolutionary sense (though I don’t agree with him on a lot of other points)
    http://www.seedmagazine.com/news/2006/11/when_two_minds_think_alike.php?page=1

    And then there’s the Underconnectivity Theory that has been shown through brain scans
    http://www.cmu.edu/PR/releases04/040727_autism.html
    How would chelation “fix” that? The brain is plastic but there’s a limit to the plasticity. Personally, I’ve been through heavy metal removal (though pills, not chelation) because I wanted to see if my sensory sensitivies decreased. They didn’t.

    Back to the Underconnectivity Theory. It meshes quite well with Uta Frith’s Lack of Central Coherence, which she gets into in “Autism: Explaining the Enigma”. I can personally vouch for this book. While I could argue with a few small points, it explained a lot about how I think, and matched up with what I found out about others.

    But that’s just it. You have to understand, or at least I think you need to understand, that to autistic advocates (i.e. those who are autistic), autism is a way of thinking. We really don’t want to be perceived as toxic, poisioned, broken etc. And we don’t think our state is “degenerated”. We are trying to be respected for who we are. It really is a separate issue from health concerns but unfortunately in the heat of argument, it gets all tangled up.

  • Kristina Chew, PhD
    Mar 1, 2007 at 9:37 pm

    Marcie, thanks for sharing so much—-as I think about it, there is autism on my husband’s side of the family as well as mine. I have been curious about a lot of the neuroscience research on underconnectivity—-I’ve sensed that it is something different about how Charlie’s brain is wired that affects how he speaks, perceives stimuli, motor-plans. Jim has ADHD and has a kind of intuitive sense for somethings about Charlie that I would not have readily noticed.

    Steve, I know that thrill of seeing a child on a bike—still remember how amazed I felt to see Charlie take off without those training wheels. When my husband taught him to use the hand brakes, they started to go on long bike rides in the local streets. Have not tried roller-skating yet; Charlie’s not so interested in art or drawing, but he always surprises me.

  • Twyla
    Mar 1, 2007 at 10:33 pm

    Underconnectivity in the brain may be related to the inflammation which has been found in various studies. It may also be related to the immune system attacking the myelin sheath which covers nerves and enables signals to go straight from point of origin to destination, like insulation for a wire. It is possible that one reason why certain biomedical treatments work for some children is because when the immune system calms down the above mentioned issues improve and so the brain is able to function better.

    Many families of autistic people have various auto-immune issues running in the family.

    Some of the genetic issues which have been discovered are related to susceptibility. For example a mutation of the MET gene was found to raise the chance of autism, but many people have that mutation and do not have autism. I think I recall that the MET gene is related to digestive and immune system issues as well.

    No brain is an island. Brains are not computers made of metal and plastic. They are living tissue which rely on the rest of the body for oxygen, nutrition, various hormones and chemicals, protection from microbes, etc. Our brains are affected by the rest of the body.

    As far as autism running in families, it is true that a parent of one autistic child is at increased risk for having another. But for most families I know, today’s autistic child was the first full blown case of autism in the family. Maybe there was a shy, scholarly, idiosyncratic and/or introverted uncle or grandparent, but they were able to speak in full sentences and live a normal life.

    Marcie, you are clearly much higher functioning than many of the kids today who have so much difficulty learning, writing, speaking. Nobody is saying that your personality should change. We are trying to help our children whose basic skills and health are impacted in a major way.

  • Kristina Chew, PhD
    Mar 1, 2007 at 10:43 pm

    Ah, now what is a normal life………. Yes, I have more than a few autistic relatives, all older than Charlie, and having very strong academic skills means that one has very strong academic skills (just as being able to speak in full sentences means being able to speak in full sentences) but one can still have other struggles, some very disabling.

    I referred to my preference not to use misleading terminology like “high-functioning” and “low-functioning” in this post.

  • Kassiane
    Mar 2, 2007 at 4:18 am

    Some quick research on kassiane+chelation would lead you to a blog which would tell you:

    a) I had an actual diagnosis, from an actual toxicologist (DDI labs doesn’t cut it) of heavy metal poisoning. I had medically supervised chelation. My lab values are probably lower than anyone on this threads’, given the followup they gave us (and no, my lab values and the protocol are no one’s business. I love HIPAA, don’t you?). The neuropathy went away, the seizures reduced but I still had an evaluation for surgery, and I am still autistic. Most allergy testing is also bunk. I had celiac testing, looking in my cupboard would tell someone how that came back, but I’m not letting you near my cupboard, too bad for you, since you’re so interested.

    b) I don’t want a cure. In fact, I have been speaking out against a cure since I was a teenager. I might have had the first “Celebrate Neurodiversity” tshirt, which I made on my computer in my senior year of high school. This was some time ago.

    c) Regardless of the above, I have a MECP2 mutation. Good thing I like being autistic, huh? and I made the shirt referenced in B before I knew about said mutation.

    My qualifications were called into question long before yours were. I just returned the favor, and when you turned it into a “who can be the biggest smartass” game, I was more than happy to oblige. I have siblings. Lots of them. I’ve had years of practice.

  • Twyla
    Mar 2, 2007 at 1:49 pm

    Kristina (or do you prefer Dr. Chew?), as you know autism is a spectrum and we cannot necessarily define what is “normal”. But there is a huge difference between, for example:

    A person who:
    -has a tendency towards anxiety and depresstion
    -has difficulty making friends, reading those mysterious social cues, expressing themselves in those mysteriously socially acceptable indirect ways
    -is cerebral and basically a “nerd” and good at “systematizing” (Dr. Simon Baron-Cohen’s term)
    -is able to drive a car, go grocery shopping, manage a bank account, live in his/her own home, speak in full sentences, maybe even keep a job, in spite of having major struggles in some respects,

    And a person who:
    -was not toilet trained until the age of 11 when gluten, casein, and soy were removed from his diet and he began taking digestive enzymes
    -at the age of 14 speaks in 4-word phrases which are often difficult to understand, even for his mother — in spite of years of speech therapy and other services as well as a very loving bonded family
    -has not learned to read or write or do math
    -will most likely, absent a miracle, never be able to live independently and needs constant supervision due to lack of common sense and basic life skills.

    We love and adore and enjoy our son just as he is, but there comes a time when a child normally grows up and spreads his or her wings and leaves the nest and is able to cope with the world after his or her parents have passed away.

    I don’t understand why some people apparently believe that only educational and theraputic interventions are appropriate and respectful of the autistic person, and that the biomedical approach somehow shows disrespect and lack of acceptance and an attempt to “cure” that labels the autistic person as defective.

    Whether an autistic person has considerable difficulty in basic life and educational skills, or whether that person is able to learn and master those skills, autistic people generally have problems which might be ameliorated with nutritional, detoxification, and/or dietary interventions. At this point there is a lot of trial and error in this approach and we don’t understand much about why some treatments work better for some individuals than for others. Each person must evaluate the potential costs, side effects, and benefits of any treatment. But to make a blanket dismissal of this whole developing science because it somehow denigrates autistic people is, in my opinion, unfortunate.

    I really wish I had known about these treatments when my son was younger.

  • Kristina Chew, PhD
    Mar 2, 2007 at 2:49 pm

    Twyla,

    I’m good with either moniker. I have written extensively about Charlie on Autismland and he is very much like your son in many ways. We found out about biomedical remedies when he was just around 2 years old and have tried several, but education has proved he best thing for him. I wrote about this in On the biomedical understanding of autism.

    I think some of the claims of some biomedical treatments can instill false hopes in some parents (I say this having known many parents who have tried many treatments). I think we need to try everything that we can, as parents. It is the metaphors of “defeating” autism etc. that seem denigrating to the ears of some autistic persons (I think; I do not claim to be able to speak for them, but that is my sense).

    And I really thank you for commenting here. A lot to think about.

  • Kassiane
    Mar 2, 2007 at 6:26 pm

    Being called a toxic waste dump, for example, or a Mad Child (Boyd Haley) is pretty denigriating. So is being called a monster, something that needs defeating, anything with the changeling mythos involved, “they came for his mind”, et cetera.

    I should think that the parents who can wade through convoluted explanations of why this or that cure scheme “MIGHT” work should be able to figure that out.

    If you wouldn’t like it said about yourself or your typical children, it’s probably not such a hot idea to say it about your autistic kids either.

  • Marcie
    Mar 2, 2007 at 9:02 pm

    Twyla said: Marcie, you are clearly much higher functioning than many of the kids
    today who have so much difficulty learning, writing, speaking. Nobody
    is saying that your personality should change. We are trying to help
    our children whose basic skills and health are impacted in a major way.

    Agreed, we are all want the best for these kids. We each do that in our own way, which is based on our experiences. I went through hell growing up. When I was at school, I didn’t want to be around the other kids because of the way they treated me. When I was at home, I didn’t want to be around my father. When I was about 13 I realized, I was “different”. I actively searched for 12 more years, not knowning what I was looking for - but I knew it when I found it. It was more liberating than I could possiblity explain. It helped to be understand myself and other people in ways I’d never thought was possible. I also eventually realized something else. My father has Asperger’s too. It was something I was loathed to admit - I did’t want this thing that I’d come to have so much pride in to come from him. But I also realized that he was at disadvantage. He grew up in a time and place where he couldn’t get a clear understanding of his inherent differences, so he just assumes everyone else is wrong, and is miserable as a result. For all these reasons and more (including those mentioned by Kristina and Kassiane) and I think it’s important to spread the idea of autism as a way of thinking and processing, not just a disability. (For an example of what I’m talking about see Donna William’s “Autism and Sensing”; also “Decartes Error” by Damasio explains what happens when logic and emotions are not integrated, though he looks at cases where it happens in adulthood, which can be much more problematic as the individuals involved are not used to thinking that way.) I’m not going to deny the disability part. A disability is anything that isn’t economically beneficial. But so many of the autistics I’ve spoken to say that their biggest problem is how non-understanding people interact with them. Personally, I can say, that even though I do my best to get along with people, if I don’t do exactly the right thing, I can get treated very poorly. And then people don’t understand that I don’t filter out emotions and get their full impact, even though I don’t seem to be having a reaction. What the worst part is is that people still expect me to act like a neurotypical, though, granted the reasons behind that are very complicated. I know I can’t expect people to just “get it”. Which is precisely why I’m an neurodiversity advocate.

    Like many people, I don’t like using the phrases “high functioning” and “low functioning”. There are so many so called “low functioning” people that do things I could never dream of. And then there’s simply the issue of prejudice - and many other bad things - that can come from those terms.

    By the way, I’m not against medical treatment, as long as it’s sound. I was born with a born with a congential heart defect, for which surgery was needed. I also acquired bilateral carpal tunnel syndrome and thoracic outlet syndrome (inflammatory conditions of the arms), which nearly disabled me and for which surgery was necessary. I am extremely health conscious for these reasons and encourage others to be too. But that simply isn’t were my main focus is concerning autism.

  • Twyla
    Mar 4, 2007 at 2:29 pm

    Although never diagnosed, I am a bit Asperger-ish myself, and I struggled for years with issues that became clearer to me when I began learning about autism because of my son’s diagnosis. For example, although I am very smart, I am not politically astute, not good at negotiating/selling/motivating a group of people. I am much better at writing than conversing — I often get tongue tied and feel as if the distance between my brain and my mouth is somehow longer than it should be. I feel like “neurotypical” people are able to shape themselves into nice rounded shapes which are presented to the world as their “personalities” whereas I am a mass of emotions that I can only express in a very direct but somewhat fragmented way, and when in doubt I just become silent. I’m not good at reading social cues and I don’t understand why we are supposed to express ourselves indirectly by implying things and understanding what others are implying. I can totally understand and appreciate why some people advocate for neurodiversity and acceptance of ways of communicating that don’t fit into what is considered “cool”.

    Nevertheless, we all try to find ways to help ourselves function at our best. For example, Donna Williams tells in “Nobody Nowhere” how, when she was at a point where she felt she was really falling apart, a nutritionist recommended a restricted diet to her — free of gluten/wheat and casein/milk — and this helped her a lot. She did not try this because she considered herself to be a “toxic waste dump” or defective merchandise, but just because she was looking for ways to help herself.

    Kassiane, all of us — whether autistic or not — are affected to some degree by environmental toxins. These toxins probably cause (or at least contribute to) a variety of health conditions and mental/emotional problems. In trying to understand how to prevent and/or treat these conditions, people are trying to help and benefit those who are affected. It’s not that you are being labeled as a “toxic waste dump”. The “Defeat Autism Now!” slogan does not mean defeat autistic people now. It means defeat the negative effects of autism that can prevent people from expressing their full potential. At the end of “Somebody Somewhere”, Donna Williams describes “What Autism is To Me” and how she can fight autism. This is the kind of fight that groups such as DAN! and CAN and SafeMinds are engaged in — It is not a fight against autistic people, but rather a fight to help autistic people.

    Kassiane, I am doing my best to listen and learn and to express myself in ways that are constructive and not offensive. I appreciate learning if I am using any terms that are considered offensive. But your tone is scornful and sarcastic. You need to think through how you communicate because if you communicate in that sarcastic, scornful way you will be more likely to receive sarcastic, scornful responses, and it becomes a cycle.

  • Kassiane
    Mar 4, 2007 at 4:20 pm

    Don’t tell me how to communicate. I do the best I can with what I have. I am not “just a little bit Aspie” like some people, I actually do have significant language challenges particularly with semantics and pragmatics that just aren’t going to vanish because someone or 100000 someones tell me they should.

    People actually call their kids toxic waste dumps. Google it sometime, I don’t have time to provide links since I have a gymnastics meet today & am getting ready to get ready for that.

    Autism is part of every cell of me. MECP2, half of my X chromosomes. You can’t defeat that without giving me Turner Syndrome….and making me non autistic is making me NOT ME. All of my jobs I’ve had were because of autistic traits (particularly the encylopedic memory part), everything I DO is because of autism (conferences, gymnastics in my 20s, writing, etc), working with autistic kids, being decent at working with autistic kids…

    Toxins may affect us all, but that doesn’t mean they cause autism. Arsenic causes neuropathy, which sucks in a serious way, but is not autism.

  • Phil Schwarz
    Mar 4, 2007 at 5:08 pm

    Twyla wrote: “I don’t understand why some people apparently believe that only educational and therap[e]utic interventions are appropriate and respectful of the autistic person, and that the biomedical approach somehow shows disrespect and lack of acceptance and an attempt to “cure” that labels the autistic person as defective.”

    It all boils down to *what* you are trying to fix, or mitigate, or accommodate.

    If my kids had GI problems, I would seek treatment for them. Not to “cure autism”, but to mitigate the GI problems. In fact, my daughter (who is not autistic, but is in the broader phenotype) does have GI issues that we have sought treatment for.

    If my kids have sensory distress, I seek mitigation for that. But that’s not “curing autism” either.

    We toilet-trained our kids; we found ways (for both of them, our autistic son and our daughter in the broader phenotype) to learn how to read, when the standard approach in public school was not working (each for different reasons). Our daughter developed speech on a standard timetable; we found and engaged educational support for our son to develop speech, which he did atypically and later on. We have negotiated school placements that support our son’s ongoing learning disabilities. He is now in a high school program with a vocational-preparedness component that provides co-op job placements starting at age 16, with support for learning the social rules of the workplace.

    But none of that is “curing autism”.

    I think where we — parents of autistic kids and the society as a whole — get all messed up in our thinking about autism, is that once a kid has an autism spectrum label, every medical, educational, psychological, or social issue that s/he has gets lumped in as part of the “autism”.

    And then we fail to apply the reasoning we would apply to identify and mitigate or accommodate the issue, if the kid didn’t have the “autism” label.

    *Of course* I am in favor of not only educational and social-pragmatic, but also biomedical approaches to mitigate or accommodate specific problems. When the problems are truly medical in nature.

    But to regard “autism” as a monolithic entity that is the root cause of everything that’s in need of mitigation or accommodation, is counterproductive. And to seek a “cure” for such a non-existent monolithic entity is folly.

    And to pursue quack “cures” is worse. The heavy metals and paper currency do not need to be chelated out of my purse. I have heard of all of the studies Steve cited on mercury, and every last one of them is flawed. You really have to be careful these days. There are kids who have been *killed* by autism quacks.

    So we have approached, and will continue to approach, each specific problem according to its own specific nature, and solve it on its own terms — *not* as part of “autism” as some monolithic “enemy”. And we are succeeding.

    At the end of the day, when all my kids’ issues have been mitigated or accommodated, guess what: they’re going to have the skills they need to navigate through a society made up overwhelmingly of minds unlike theirs, but they’re still going to have minds that think, sense, and feel differently than the majority.

    *That* is the core essence of autism. *That* is what cannot, and *should not*, be “cured”. *That* is what it is insulting to people who are wired that way, to tell them is defective or needs to be “cured”.

    They have a *right* to feel, sense, and think differently. They have a right to expect society to accept those differences. They have a right, and we have an obligation to assist them, to assert that right. That is a part of autism advocacy that does not get enough priority and resources.

    *That* is what the autistic self-advocacy movement — the so-called “neurodiversity” movement — is all about.

    And guess what: I am not only a parent, I am part and parcel of that movement. In my organizational affiliations and in my personal life as a parent. And as an individual on the spectrum, because I’m not only the father of an autistic son and a daughter in the broader phenotype, I’m also an AS adult.

    – Phil Schwarz
    Vice-president, Asperger’s Association of New England (http://www.aane.org)
    Board member, Autism National Committee (http://www.autcom.org)
    Board member, Massachusetts chapter, Autism Society of America (http://www.autism-society.org)
    Conference planning committee member, Autism Network International (http://www.ani.ac)

    …but most importantly, Dad of Rachel and Jeremy, and happily married to Susan (our family’s token non-autistic :-))

    There are more of us out there than you realize.

  • Marcie
    Mar 4, 2007 at 10:07 pm

    “they’re going to have the skills they need to navigate through a society made up overwhelmingly of minds unlike theirs, but they’re still going to have minds that think, sense, and feel differently than the majority.”

    I wish there was some resource I could recommend to parents that explained the basics of the “it’s not like you think” approach; that all behaviors communicate something, you just have to know how to interpret them (and here’s a little about how to do it). Case in point, there was one person who was freaked out by her son spinning - she thought his brain was “stuck”. I explained to her, no really, stimming is a good thing. Fortunately, I did have a reference to back me up (there really was no reason to just go on my word) and she was quite releaved.

  • Kristina Chew, PhD
    Mar 5, 2007 at 3:35 am

    Marcie: There is a video, “Straight No Chaser,” of the jazz musician Thelonious Monk in which he just stands up from the piano and spins. It’s after some years of trying to “redirect” “inappropriate” behaviors and often seeing lead to increasing the rate at which Chralie did the behavior, that I’ve learned that stimming has its place, and—after Charlie paces or runs back and forth a lot and jumps, etc., he just stops. (And is somewhat more able to focus.) Perhaps someone here could start writing that resource of the “it’s not like you think” approach…..

    Thanks for sharing about yourself Twyla. It has seemed to me that the words “cure” and “defeat” in CAN and DAN more often seem to have connotations of “eliminate.” References to chelating and otherwise eliminating “toxins” from a person’s body can seem carry with them the sense that a child is her or himself “toxic,” as Kathleen Seidel was quoted in a Washington Post article last week.

  • Twyla
    Mar 5, 2007 at 1:06 pm

    Phil -
    I certainly do not view autism as a “monolithic entity”

    Gastrointestinal problems impacting learning, mood, and behavior can be present even in the absence of obvious GI symptoms. For example:

    – Lisa Lewis, author of “Special Diets for Special Kids” says that her son did not have GI symptoms. But with the GFCF diet his communication, mood, behavior and learning all improved substantially.

    – Karen DeFelice, author of “Enzymes for Autism and other Neurological Conditions”, has two sons. One had stomach aches, the other had autism but no GI symptoms. After going on the GFCF diet and then digestive enzymes, both sons’ conditions were ameliorated.

    I went to see Temple Grandin speak about medications. I wasn’t considering meds for my son, and he does not have much in the way of behavioral problems, but I was just interested to hear Temple speak. When she spoke about meds for behavioral issues, she suggested that before trying meds a trial of the GFCF diet should be done. She said that in her experience, having spoken with many parents and autistic people throughout the country for years, this diet sometimes has significant positive impact on behavioral issues.

    There are various theories as to why this diet helps some autistic people. Perhaps mercury impairs the enzymes we normally use to digest the gluten and casein proteins, and mercury disrupts the immune system by damaging dendridic cells, and the results are underdigested peptides that act like opiates as well as an inappropriate immune system response resulting in inflammation.

    But the reason people try this diet is not because of the theory but because so many parents and practitioners as well as some autistic people themselves report very beneficial effects on physical, mental, and emotional symptoms.

    This does not mean that autism is being viewed in a simplistic way. It means that people are looking for ways to help themselves and their children, and many have found that treatment of GI and immune system issues has effects extending beyond just poop and allergies.

    Dr. Amy Yasko says that her first autistic patient was brought to her because of his inflammatory bowel disease. When she treated his IBS he began to talk for the first time. There are too many stories like this to be ignored.

    The DAN! practioners I have seen speak and/or whose books I have read emphasize individuality, and they do not promise miracle cures. There is no question that autism is complex, and probably multicausal. Even if it is confirmed that mercury can cause autism, mercury affects individuals in different ways, depending on many issues including individual biochemistry, immune system vulnerability, and personality as well. And treatments vary greatly in effectiveness. Autism is indeed a puzzle. But don’t put down those who are investigating the relationship between mind and body, and physical issues throughout the body. This does not show disrespect for autistic people. It is not a rejection of autistic ways of thought.

  • Steve
    Mar 5, 2007 at 2:14 pm

    Well I have to say that I missed quite a bit of bantering while I was away.
    First let me address my more recent reference from Phil Schwarz.
    Mr. Schwarz states,.”I have heard of all of the studies Steve cited on mercury, and every last one of them is flawed.”
    Well, alrighty then. How do you know that? Making a broad brush statement like that is awfully bold, especially when you are providing no proof what so ever to back it up. If you had truly read what I wrote before, you would understand that what I am sharing is information that seems to pertain to my children and how we have treated them. If this information can help at least one family (which in our case has already helped 20 families) then I will continue to share this.
    The typical response that I get from people (who are pro-vaccine, pro-thimerosal or don’t treat my children) is that all the studies contrary to their belief are flawed. Yet, they never provide any substantial proof otherwise. And when they do provide (so called) “conclusive” proof that there is no correlation, it always seems to be the pharmaceutical backed studies. You can never trust a study that is backed by the same company that produces said product. (ie: VIOXX) That is called conflict of interest.
    I saw that most recently during the last ACIP meeting at the CDC. The so called impartial lecturer on the subject of Thimerosal and Autism just happened to be a consultant for three of the major pharmaceutical companies as well as a paid lecturer for one.
    Now tell me this; how am I supposed to believe anything he says?
    And tell me this too; how can anyone in their right mind say that injecting a mercury based substance (or aluminum to that matter )into a developing childs body is safe?
    (Hint: It’s not. Just look up the side effects of thimerosal on the side of the bottle. You know the one that has a skull and crossbones on it.)
    And finally, Kassiane, my favorite blogging partner. Just try to be nice.
    (Twyla said: “You need to think through how you communicate because if you communicate in that sarcastic, scornful way you will be more likely to receive sarcastic, scornful responses, and it becomes a cycle.”
    Kassiane responded: “Don’t tell me how to communicate. I do the best I can with what I have.”)
    Just a quick hint, when you actually post blogs or e-mail, you have time to review something before you post it. It is a simple task that would save a lot of heartache in the future.
    In addition, based on the information that you have given us, I would have to say that there is difference between MECP2 and autism. In fact The symptoms of MECP2 are most easily confused with those of autism. (By the way, I took your advice and googled information as well as read some studies from some medical journals.) So in a case like this, I would have to ask how do you want to be labeled? (And this is not a condescending question since you claim to be both) What I have seen from you already is that you want to be treated the same as everyone else, but you want to celebrate your neurodiversity. You can do both, but when someone treats you the way that you treat them, don’t fall back on the ‘picking on an autistic girl’ defense. I found really no remorse when you threw that out there. I have been called much worse things than a toxic waste dump (that is only an example, something I have never called you or would even say to you) in my life and guess what, they are only words. If someone like myself (or Twyla) says that you are being rude, take it as constructive criticism. Go back and read what you wrote and see if that person is right.
    These sort of sites/blogs should be used to express your point of view and cite what sources (whether it is scientific or QBE) it came from and not to totally disparage someone else’s experiences.
    What I seem to find on a lot of these sites is that people cannot differentiate between genetics and those who have heavy metal toxicity. And yes there is a big difference. It means some can be treated and some can’t. We are all genetically different and making broad brushed statements that really only pertain to one individual is not very constructive in the big scheme of things.
    I have learned a lot from Kassiane, a lot about another aspect of genetics that I had not looked into before. But, I still believe that toxins play a big role in what is happening today.
    And remember, just because I don’t have it, doesn’t mean I don’t understand it.

  • Kassiane
    Mar 5, 2007 at 2:27 pm

    I have yet to see a DAMN! practitioner who DIDN’T promise cure.

    The late Bernard Rimland informed me that a thousand hands clapping was painful because I was magnesium deficient. No, it hurt because regardless of how much you supplement me, I’m hypersensitive to sound and my audiogram reflects this. No matter what I am on it DOES NOT CHANGE. Removal of gluten didn’t change it, Feingold didnt change it, enough magnesium to send me to the toilet every 10 minutes didnt change it. So much for the miracle cure for needing neon orange earplugs.

  • Kassiane
    Mar 5, 2007 at 6:23 pm

    Re: MECP2 and autism.

    My official on paper diagnosis is Speech Preserved Rett…which is on the autistic spectrum, from one doctor…the geneticist.

    If we are looking at PHENOTYPE, I am autistic & epileptic. Lots of NON Rett (aka very good use of hands, normal head circumference, et al) autie girls have MECP2 changes. My winter hat is from the toddler department and I have piss-poor fine motor skills, hence the Rett designation, otherwise i’d be autistic & epileptic with a MECP2 mutation, officially speaking.

    Because of all this mishmash, I self identify as Rett-Autistic, as others are Asperger-Autistic or Kanner-Autistic or Autistic-NOS. It’s a different flavor of autism, but it’s still autism.

    Incidentally, for many of us it is way easier to read a posting if there are full spaces between paragraphs rather than indents. Lots of white space=OW.

  • Twyla
    Mar 6, 2007 at 3:31 am

    Wow, you have a lot on your plate. Thanks for educating us.

    Autism is certainly multifaceted. I’m sure it must be frustrating that the nutritional interventions you have tried have not worked for you.

    I expect you are already familiar with a recent study by the Rett Syndrome Research Foundation (RSRF) in which “restoration of fully functional MECP2 over a four week period eradicated tremors and normalized breathing, mobility and gait in mice that had previously been fully symptomatic.” Maybe some hope for more effective treatments in the future. (I know, you’re not a mouse…)

  • Marcie
    Mar 6, 2007 at 8:10 pm

    “Perhaps someone here could start
    writing that resource of the “it’s not like you think” approach…..”

    Oh I’ve thought about it, but then I have no idea about how even to begin. I’ve done a lot research on emotions, neurobiology (at least to a point), society, economics, and states of consciousness and sensory perception. But my writing is rather hypothetical and technical in nature (I did great in college).

  • Ste