Katie Wright-Hildebrand, NAA and Safe Minds Board Member
Katie Wright-Hildebrand, autism mother and daughter of Autism Speaks co-founders Bob and Suzanne Wright, has joined the boards of the National Autism Association (NAA) and of Safe Minds, two organizations that advocate for a link between autism and mercury.
Also: Dr. Andrew Wakefield—the primary author of the first paper suggesting an MMR-autism link (a paper that has since been retracted by the journal that published it)—is one of four Keynote Speakers at the Autism Society of America’s 2007 conference in Jacksonville Phoenix, AZ.
Things are getting very interesting.
Related Stories
POSTED IN: Autism Organizations, Health, Vaccines
66 opinions for Katie Wright-Hildebrand, NAA and Safe Minds Board Member
mom-nos
Apr 5, 2007 at 4:29 pm
“Interesting” is one word for it.
I have the same feeling in the pit of my stomach that I had when the Supreme Court decided to halt the Florida recount in 2000.
And look where that got us.
jypsy
Apr 5, 2007 at 4:47 pm
One could almost see the smoke come out of Katie’s ears today on Oprah when the Dr. (Anshu Batra) said the question of a vaccine connection to autism “has been pretty much refuted”. Quite a production was made of the fact that she insisted she be allowed to address this issue. She blurted out “The vaccine connection has not been refuted at all!” and Oprah said “Katie feels vehemently that in the case of *her* child vaccines play a role”. Oprah, to her credit, went on to say that the CDC studies showed no connection.
Kristina Chew, PhD
Apr 5, 2007 at 5:05 pm
Smoke or sparks………
Caroline
Apr 5, 2007 at 5:14 pm
While I believe in dispelling the myths surrounding autism that create stigma, and a federal push to give all individuals the same level of services and supports - in short, that everyone has potential and society needs a major attitude change - I am not in agreement with many on this blog re: vaccines. I think where there’s smoke there’s fire.
I am glad that it is up for debate once again.
(what is the medical profession’s reason for ‘regressive autism’? It cant be that parents of children who ‘regress’ are just delusional)
I was distracted by Oprah’s earrings!
I did not like the sibling segment. It only fuelled the stigma. How would each of the siblings feel if they developed autism and everyone talked about them in such negative terms? That part belonged in family therapy.
Michelle Dawson
Apr 5, 2007 at 5:42 pm
Ivar Lovaas is on the Advisory Board of the National Autism Association.
Kristina Chew, PhD
Apr 5, 2007 at 6:46 pm
There is no credible scientific evidence for the vaccine-autism link; one wonders if attention on this will take the focus away from education and services? I do think the continued recurrence of the vaccine-autism theory is a sign of something though…..
I missed the sibling segment—thanks for telling me about it though it sounds as if it were rather slanted—thanks for that info, Michelle.
jypsy
Apr 5, 2007 at 7:19 pm
My comments about the show (including the sibling part) are over on Kev’s new Parent Forum on this board
daedalus2u
Apr 5, 2007 at 7:20 pm
400 years ago, they blamed witches when something went wrong. The absence of an alternative explanation doesn’t make that one right.
There is no evidence for a vaccine-autism link. In other words, there is exactly as much evidence for a witches-autism link, as there is for a vaccine-autism link.
Caroline
Apr 5, 2007 at 7:21 pm
Hi Kristina,
Here’s the thing about genetics/hereditary cause vs. vaccines or environmental trigger - if it is an assault to the system via vaccines or pollution, then society will have to accomodate the grave mistake in the form of services, education, acceptance, value of each human being -the social contract.
I fear if the ‘its all genetic ‘idea gains total acceptance, and people choose to have children knowing the possibility of a ‘predisposition’ society will say, in effect, you chose to have this child, pay for the services and education on your own.
Jennifer
Apr 5, 2007 at 7:50 pm
Michelle,
Thanks for pointing out that Ivar Lovaas is on the board of the NAA - specifically the “Early intervention” part of the advisory board. And he’s there with an intersting group, including Wakefield, Gutstein, S. Jill James, Deth, Boyd Haley, and others.
Just goes to show that non-scientists (and failed scientists) flock together.
Kristina Chew, PhD
Apr 5, 2007 at 7:53 pm
Good point Caroline—I think there are deep-running emotional reasons for parents adhering to the vaccine theory. I think parental blame is a major reason why there is fear of an “it’s all genetics idea”—-though I think it can be pointed out that no disease is entirely genetic; so many factors coming into play. But the evidence for a vaccine-autism link is not there.
But the need to teach our kids always is.
Club 166
Apr 5, 2007 at 7:56 pm
It would seem, as Autism Speaks gobbles up smaller groups and starts its own research arm, and as ASA isn’t all that different sometimes itself, that AS people feel that they are reaching “critical mass” in being able to set the whole “autism agenda”.
By that I mean they feel that they, and they alone, should “speak” for the “autism community”. That it’s OK for them to use the strength of their numbers to spew things that have no scientific basis, and to repeat them often enough, in public places like Oprah, until they convince everyone of the inanity they preach.
And thru the money they control, control the direction that autism research takes. All while putting a veneer of respectability on it by making like everyone in the “autism community” wants the same things done.
Daisy
Apr 5, 2007 at 8:04 pm
I, too, was bothered by the siblings section. I know first hand that one needy child can take attention away from another; that “neediness” doesn’t have to be autism. That “dysfunction” doesn’t have to be devastating.
jypsy
Apr 5, 2007 at 8:06 pm
The Autism Society of Prince Edward Island sent out an email today stating, among other things “I encourage you to tune-in or record this program. The guests, mainly from “Autism Speaks” are highly credible.”
daedalus2u
Apr 5, 2007 at 8:14 pm
It can’t be all genetic.
Monozygous twins can be discordent for autism and ASDs. There is an environmental component.
For those who think it is a “complex genetic disorder”, how does a “complex genetic disorder” evolve? How do the genes that comprise the “complex genetic disorder” become common in the gene pool? Only by being conserved. The only way genes can be conserved, is if they are actually a benefit.
Kristina Chew, PhD
Apr 5, 2007 at 8:43 pm
This is from Oprah’s website on the show:
This is mentioned right after a parent talks about a child head-banging, so I think the context is not exactly upbeat…….I am not sure what is being referred to here—some effort to teach her son sign language? “Stimming” of some sort—-I am wondering about Katie Wright’s point here as her son goes to a well-known autism school in Manhattan that, one would think, would offer guidance in these areas. Playing a musical instrument is a great idea of course but there are a lot of steps in between it and “hand gestures.”
daedalus2u
Apr 5, 2007 at 8:52 pm
If these people think that a “vaccine” is an assault on the immune system (months later, huh?), how about malaria? How about parasites? How about malaria and parasites? How about malaria, parasites and malnutrition? How about malaria, parasites, malnutrition and worms in the gut?
Actually, worms in the gut are pretty good therapy for IBD and Crohns.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15825065&query_hl=1&itool=pubmed_docsum
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=15591509
Any “assults” on the immune system in the developed world are from inactivity, not from exposure to antigens.
Caroline
Apr 5, 2007 at 9:29 pm
Hi everyone -
Kristina, Katie Wright is probably focusing on the biomedical treatments because after trying these things (whatever they are it was be nice to see a detailed protocol) they are seeing positive results. Maybe the family is not seeing the results from therapy that you have seen in Charlie because the therapists do not have the knowledge that your team has. This is just a guess.
A followup film would be nice, as the children featured apparently have made huge progress since it was filmed.
The other thing that bothered me was Alison Singer saying her younger daughter has never known a world without autism - what about her sweet, smart, loving daughter who supposedly is diagnosed with autism? I do agree with her asking for society’s understanding. I did appreciate that part very much.
Sarah
Apr 5, 2007 at 9:49 pm
Caroline, I’m afraid I find your position rather perplexing. Shouldn’t we care about what’s actually true, not just what explanation of autism (you think) will provide services? I find what you say especially perplexing because those who promote the vaccine causation theory tend to be least interested in providing actual services and accomodations for autistic people. Besides, your idea isn’t even terribly realistic. There are plenty of instances where the government has contributed towards disability and then provided few if any services to those affected afterwards. I tend to believe that society will provide aid and accomodations to all of its citizens when it decides to, regardless of what “caused” the disability. And I definetly believe that the pursuit of scientific truth should not be affected by people’s feelings and possible parental guilt over genetics, etc. We all have genes that might carry disease or disability in some way. Under the social model of disability, we need not feel ashamed or defective because of this. Regardless, vaccines shouldn’t be scapegoated just because the genetic explanation makes some people uncomfortable and because there are some bigoted, ablist people out there.
(Besides, couldn’t it be argued that the vaccine theory also might cause parental guilt? After all, parents decide to vaccinate. I think vaccine theory proponents should be ashamed of themselves, quite frankly, for making parents feel guilty just for doing something that any responsible parent should do.)
Caroline
Apr 5, 2007 at 9:58 pm
great point Sarah! Thank you!
Joe Herr
Apr 5, 2007 at 9:59 pm
The situation is so bad that works which even hint that vaccines as the cause of autism are rejected.
Nothing should be considered eliminated until the cause is identified.
Joe Herr
Apr 5, 2007 at 10:02 pm
The situation is so bad that submissions which even hint that vaccines are the cause of autism are rejected.
Nothing should be considered eliminated until the cause is identified.
Kristina Chew, PhD
Apr 5, 2007 at 10:09 pm
Caroline, Yes, I am really curious if Katie Wright might detail more about the protocols she has done for her son, along with the education he has been receiving—I think this is the school mentioned by Suzanne Wright that he attends. You’re right, it would be interesting to see a film with the same children in the first one (the first “Autism Every Day”) so their progress could be noted—-and understanding and compassion, as Singer noted, are for sure ever needed, and more and more—
Sarah, the connection you make between vaccines and parental guilt is one I have been thinking of…..
Thanks to Mr Herr; I think there is more and more talk now of the “causes” of autism.
Club 166
Apr 5, 2007 at 10:14 pm
Nothing should be considered eliminated until the cause is identified.
Well, by this logic, we can’t eliminate the possibility that global warming causes autism. Or that space aliens are causing it. Or the cosmic rays of Milliken.
Societies that have never had Thimerosol in vaccinations still have autistics. Autistics existed in Western society before vaccination. Removal of Thimerosol from vaccines hasn’t decreased the rate of autism.
How much proof does a person need?
And why waste time looking for Bogeymen when what is needed is treatment, accommodations, and acceptance of autistics, right here and right now?
Caroline
Apr 5, 2007 at 10:31 pm
Yes Kristina, I am pretty sure this is the school. They have a very long waiting list.
MAría Luján Ferreira
Apr 5, 2007 at 10:45 pm
Hi Club 166
There are recent studies on pharmacovigilance that demonstrate how immune system can be affected by vaccines,
For example
Eur J Pediatr. 2005 Nov;164(11):691-7. Epub 2005 Jul 26.
Nineteen cases of persistent pruritic nodules and contact allergy to aluminium after injection of commonly used aluminium-adsorbed vaccines.Bergfors E, Bjorkelund C, Trollfors B.
Department of Primary Health Care, Goteborg University, Box 454, 40530 Gothenburg, Sweden. elisabet.bergfors@allmed.gu.se
Rare cases of persistent pruritic nodules, sometimes associated with aluminium (Al) allergy, have been reported after the use of several Al adsorbed vaccines. During vaccine trials in the 1990s a high incidence of pruritic nodules (645 cases/76,000 recipients), in 77% associated with Al allergy, was observed after the administration of diphtheria-tetanus / acellular pertussis (DT/aP) vaccines from a single producer. In the present report 19 children with pruritic nodules after vaccination with Al hydroxide-adsorbed DTaP/polio+Hib (Infanrix, Pentavac) are described. The children had intensely itching nodules at the injection site, often aggravated during upper respiratory tract infections, and local skin alterations. So far, the symptoms have persisted for up to 7 years. The median time between vaccination and onset of symptoms was 1 month. 16 children were epicutaneously tested for Al, all with positive reactions indicating delayed hypersensitivity to Al. The condition is not commonly known but is important to recognise, as the child and the family may suffer considerably. Future vaccinations with Al-adsorbed vaccines may cause aggravation of the symptoms and the Al allergy. Al-containing skin products, such as antiperspirants, may cause contact dermatitis. Nodules may be mistaken for tumours. Even though the incidence of itching nodules and Al allergy after administration of Infanrix, Pentavac and other Al-adsorbed vaccines is probably low, research to replace Al adjuvants seems appropriate. We conclude that intensely itching subcutaneous nodules, lasting for many years, and hypersensitivity to aluminium may occur after DTaP/polio+Hib vaccination of infants.
Link
Scand J Infect Dis. 2007;39(1):83-6.
Neurological morbidity and the pertussis vaccine: an old story revisited.Schupper A, Shuper A.
We describe 3 children with neurological disorders that developed in association with their receipt of the whole-cell pertussis vaccine. Newer studies supported the ability of the wP vaccine to adversely affect the CNS. The possibility that it worsened their clinical course in infancy by causing additional damage should not be disregarded.
Link
*Whole-cell but not acellular pertussis vaccines induce convulsive activity in mice:
evidence of a role for toxin-induced interleukin-1beta in a new murine model for analysis of neuronal side effects of vaccination
Link
Our findings provide the first direct evidence of an immunological basis for pertussis vaccine reactogenicity and suggest that active bacterial toxins are responsible for the neurologic disturbances observed in children immunized with Pw.
*Modulation of the infant immune responses by the first pertussis vaccine administrations.
Link
Here, we have analyzed the cytokine secretion profiles of two groups of 6-month-old infants having received as primary immunization either a whole-cell (Pw) or an acellular (Pa) pertussis vaccine in a tetravalent formulation of pertussis-tetanus-diphtheria-poliomyelitis vaccines.
Both groups of infants secreted IFN-gamma in response to the Bordetella pertussis antigens filamentous haemagglutinin and pertussis toxin, and this response was correlated with antigen-specific IL-12p70 secretion, indicating that both pertussis vaccines induced Th1 cytokines. However, Pa recipients also developed a strong Th2-type cytokine response to the B. pertussis antigens, as noted previously.
In addition, they induced Th2-type cytokines to the co-administrated antigen tetanus toxoid, as well as to the food antigen beta-lactoglobulin. Furthermore, the general cytokine profile of the Pa recipients was strongly Th2-skewed at 6 months, as indicated by the cytokines induced by the mitogen phytohaemagglutinin. [b]These data demonstrate that the cytokine profile of 6-month-old infants is influenced by the type of formulation of the pertussis vaccine they received at 2, 3 and 4 months of life.[/b] Large prospective studies would be warranted to evaluate the possible long-term consequences of this early modulation of the cytokine responses in infants.
Related to BDNF there are several publications about dysregulation of this brain derived neurotrophic factor in autism, since born- besides a serie of dysregulation of the immune system and also of the Toll-like receptor 9 (recently in IMFAR 2007).
Now how does a polivalent vaccine of this kind affects a child born with a tendency to Th2 shifting-related to BDNF high values as newborn, such as some subgroup of autistic children have? How THE OVERALL schedule affects a child in these conditions? Or a child with IgA defficiency-untested generally before vaccination?
Personally, I consider that to ask to safer vaccines -based on published reports about the need of and from the pharmacovigilance- is different-totally - of being antivax or to consider vaccines as a CAUSE of autism.
What about an insult? The CDC has considered seriously the issue and the genetics is being explored - and will be - to analyze the genetics susceptibility to adverse reactions to vaccines not only in autism, but also in other genetically susceptible children.
Link
Having a painfully personal experince in my son, with the clinical data to support it, I consider that this kind of research can give some light to the issue- if controversy is left to a side and the equilibrium is maintained in the discussion, iinvolving the proper consideration of the CDC warnings in the issue by the peditrician and the correct management of the safety of the vaccination schedule at an individual level.
With the new knowledge about the complexity of the immune system that year after year is being more and more discovered ( prenatal and postnatal) this kind of research is important, especially if it is done as it is proposed, exploring the correlation of different polymorphisms in the Human Leukocyte Antigen (HLA) with hypo/hyperresponsiveness to every vaccine (and there are a lot of clues published on the issue).
MAría Luján Ferreira
Apr 5, 2007 at 10:52 pm
Hi Club 166
And by the way I agree with you wholeheartdly that ALSO what is needed is treatment ( the proper one with the proper protocol to detect concomitant medical problems to a diagnosis of ASD), accommodations, and acceptance of autistics, right here and right now, of all ages.
BUT for my son, not ONLY what you posted as needed.
Thank you
John Best
Apr 5, 2007 at 11:40 pm
Children who have been cured with chelation prove thimerosal caused the epidemic beyond any reasonable doubt. There was no such thing as autism before thimerosal. This is proven by the fact that nobody can produce any 76 year old autistics.
Who here thinks Oprah wants to lose advertising revenue from Pharma by letting Katie Wright talk about thimerosal?
What other reason could there be for Oprah not inviting JB Handley on to talk about how Generation Rescue is responsible for curing lots of kids?
Kristina Chew, PhD
Apr 5, 2007 at 11:46 pm
If you do a search of this blog, you can read about a 73 year old autistic man.
Another merger for Autism Speaks?
John Best
Apr 6, 2007 at 12:09 am
Kristina, I know there are 73 year old autistic people. I’m still waiting for 76 year olds though (and Kevin Leitch’s relatives don’t count).
Kristina Chew, PhD
Apr 6, 2007 at 12:24 am
I suspect there are more than a few who are over 76.
Merger thoughts?
Zaecus
Apr 6, 2007 at 6:55 am
Dear god, I actually thought Lovaas was dead for some reason.
And I think that a follow-up to the Autism Every Day video would be a smashing idea. Especially if it started with a public apology for having deliberately staged such an atrocious lie (link for references, one back to this blog: http://www.kevinleitch.co.uk/wp/index.php?p=396) in such a way that any follow up video couldn’t hope to show anything resembling ‘progress’ but only a correction of the record.
Kathy
Apr 6, 2007 at 7:05 am
It is believed that Albert Einstein was autistic, John.. And he was born in 1879!
And what about Alan Turing, pioneer of computer sciences, born 1912 (appeared to be a math savant..)
Other Autistics(Rich Schull for one!) have identified Alan as autistic!
Your arguement holds no water John.
There are others.. Michaelangelo.. Thomas Jefferson….
Kristina Chew, PhD
Apr 6, 2007 at 10:45 am
He is still in LA, I think……
As Autism Speaks wants to make autism a “word for the history books,” perhaps it would behoove them to learn the full history of autism.
Club 166
Apr 6, 2007 at 1:23 pm
Hi, Maria.
In looking over the abstract that you posted for the first article, it is talking about Aluminum, not Mercury. And of note, nowhere in this abstract do I see the word autism. I see talk of rashes and pruritic nodules (itchy bumps) but that’s about it. Even though they followed these patients for an amazing 7 years!
I would think that if a significant number of those patients developed autism, any researcher worth their salt would have been all over that.
As to the issue of “If vaccines can be made safer, should they be?” Well of course they should. And the CDC is right to look into identifying whether particular groups are more susceptible to vaccines.
In regards GI (and other health) issues in autistics. I’ve stated before that I do not discount that there may be greater susceptibility to certain other medical problems in autistics. And those problems need to be diagnosed and properly treated. I just don’t think that chelation qualifies anywhere in the treatment of any autistic in normal circumstances.
Bink
Apr 6, 2007 at 4:23 pm
I wish my grandfather were still alive. I could trot him around to conferences and have him put on his Autistic Codger show. :-) He died a few years ago at age 93, and he was as autistic as all get-out. Of course, they didn’t call it autism back then. His two kids are also on the spectrum (and in their mid 70’s) and some of their children and grandchildren are, too. I would never inform anyone else that I knew for sure that autism was in their genes, but I know it’s in mine, and the idea of their being no older autistics is utterly ridiculous.
María Luján Ferreira
Apr 6, 2007 at 4:40 pm
Hi Club 166
I only presented the mansuscript to show that there are negative reactions to vaccines in otherwise non-autistic children.
What about the effects in autistic childrem that are known to have different immune system- at least several subgroups of them?
I never said that - in this case anything mercury , Aluminiun, the whole vaccine- CAUSED autism. Sorry but the intention was never to present the manuscript as evidence of CAUSE.
You say
“I just don’t think that chelation qualifies anywhere in the treatment of any autistic in normal circumstances”
I agree. But what about when your son shows in blood 40 times normal of Hg; near 9 times normal average of Aluminium- without exposure to contminated fish (not ingested the previous year) or vaccines ( given 2.5 years before) or contamination of any kind in water and no pica- tested?
I agree with you that chelation is NOT NOT a treatment for autism. Chelation is a treatment of heavy metals poisoning- or even essential elements accumulation such as Wilson or even Fe bioaccumulation. And the main point of all these is the testing (what, when, how and under the advice of who) and the interpretation of . If you present concerns about the “challenge” test I will agree with you that it is not in the standard. If you present concerns about the problems with labs, I agree that you need independent labs for testing, If you present concerns about the need of confirmation in blood, urine of heavy metals contamination, I agree with you- and in fact it was our case under certain circunstances, for me very much related to the CMP in my son.
Now, what about when your anecdotical evidence fits every concern you have and the results are positive- repeated many many times in more than 2 independent labs? IS this a proof of something? No.
Should I treat my son? Absolutely.
Is chelation going to “treat autism”? No, it is going to treat heavy metal accumulation.
Is this going to impact positively my son well-being? Well, it all depends about how the process is done, with what controls, under the advice of who and with what care. This is not an easy medical procedure and we searched for the best help available ( the least aggresive, less unconfortable, with less potential secondary effects in the short/long term at the best of the information we could get).
I want to tell you that I appreciate your time to let me know your thoughts about- and the opportunity of a fruitful exchange of ideas. Thank you
Kristina Chew, PhD
Apr 6, 2007 at 5:41 pm
bink, you can include my grandfather—he would have been nearing 100 now—among those “autistic codgers” too.
Club 166
Apr 6, 2007 at 9:00 pm
Hi, Maria,
There are certainly rare negative reactions to vaccines, just as there are negative reactions to almost everything that can be administered. I guess I don’t see that as relevent when discussing autism.
As to autistics having altered immune systems or accumulating heavy metals, I have seen no credible evidence of either of those things in peer reviewed mainstream journals.
And I would be very suspect of someone telling me my kid had toxic levels of metals in him.
Are these doctors telling you this DAN doctors, or someone who is a bit more objective?
I know that your’e just trying to do what is right for your son, I just think that you are being fed a truckload of horse manure, and are incurring unnecessary risk (chelation) because the proverbial wool has been pulled over your eyes by charlatans.
It is unfortunate that people with medical degrees are allowed to give such unwarrented treatment for conditions that don’t exist.
I suspect that someday, since you seem to be a somewhat open person and don’t accept everything that people tell you, that you will see that you have been had, in a big way, by those who have treated your son. Keep questioning.
Julie
Apr 6, 2007 at 9:38 pm
I will just say one thing that made me laugh my brother-in-law said that 100 percent of people who drink water die. Does that mean that water is killing them?
María Luján Ferreira
Apr 6, 2007 at 10:01 pm
Hi Club 166
You say
As to autistics having altered immune systems or accumulating heavy metals, I have seen no credible evidence of either of those things in peer reviewed mainstream journals.
I consider that perhaps you have not read enough about ABC transporters, the current studies on aminoacid transporters, the currents status of PgP and MDR transporters and the heavy metal/toxic/essenttila metals research including the works of Dr Woods and Dr Zalups that are presenting,w ith many others, avenues of research about disturbances in heavy metals/essential elements/ others not only in ASd but also in other fields related to neurodevelopment- and including the new findings in neuroimmuntoxicology and second signalling messengers (all the PK systems and apoptosis/necrosis system signalling to begin with).
And I would be very suspect of someone telling me my kid had toxic levels of metals in him.
You know absolutely nothing about me -or the doctors I consulted - to have this opinion- unfounded and also offensive.I did not TRUST anyone telling me NOTHING, I have repeated by several local labs ( I live 15000 km away USA) and enough repeated in my country to know what I am telling. You words are out of order here.
Are these doctors telling you this DAN doctors, or someone who is a bit more objective?
In my country there are no DAN doctors. I consulted several doctors/immunologit/toxicologist/psychiatrists looking at my son´s results and they agree. You are only been patronizing. I complain.
I know that your’e just trying to do what is right for your son, I just think that you are being fed a truckload of horse manure,and are incurring unnecessary risk (chelation) because the proverbial wool has been pulled over your eyes by charlatans.
I am sorry that you have so low level opìnion about me. Your problem and your privilege- otherwise also offensive. Do you want to discuss SCIENCE? Anyway, anytime; but please do not talk about what you do not know.ME and the basis of my decisions.
Or do you think in some kind of international conspiration of labs to tell us, parents of autistic children, that our children are HM poisoned?
It is unfortunate that people with medical degrees are allowed to give such unwarrented treatment for conditions that don’t exist.
Really? What do you know that I do not know about who is helping me in this path? Your words are out of order here.
I suspect that someday, since you seem to be a somewhat open person and don’t accept everything that people tell you, that you will see that you have been had, in a big way, by those who have treated your son. Keep questioning.
I kept questioning from the first day. It is really really unfortunate that you use so patronicing tone with me, especially because you have no idea about my background or what has had my approach to my personal path or who I consulted or who I am discussing with ( International researchers in the field mainly- not even discussed in the blogosphere-, not only doctors in practice in my country or foreign to my country) or nothing. Probably, time will tell who has been extremely misleading.
And no, I have not been “fed a truckload of horse manure”. I am not stupid or gullible, as you seem/pretend to say.
I am sorry _Kristina. I should have not shared this kind of information probably, considering that this was going to be the reaction. I apologize and I will not share this kind of info again. My mistake.
Kristina Chew, PhD
Apr 6, 2007 at 10:20 pm
María, I really appreciate it all the more that you have shared it—-I know we do not agree about a number of issues concerning causation and treatment of autism but, most of all, it means a lot to me, María, that we 2 mothers trying to do the best for our 2 kids in the ways that we can. As my friend Club 166 is also doing for his son………… we all have much learn.
Club 166
Apr 6, 2007 at 11:47 pm
Maria,
My sincere apologies.
E-mails and computer forums are not the best ways to communicate, where nuance is often lost, and comments misinterpreted. In re-reading my post, I can see where I could be taken as being condescending, and I apologize, as I never intended in being so.
It is obvious that you are very educated, and I did not intend to disparage you in any way.
I would be interested in the specific citations for the works you cite.
Regards,
Joe (Club 166)
Kristina Chew, PhD
Apr 7, 2007 at 12:47 am
When it comes to our kids, it’s impossible not to be emotional—I think we all understand that, and that we need to keep talking, to keep the conversation going.
Thanks to everyone.
María Luján Ferreira
Apr 7, 2007 at 12:33 pm
Hi Joe
Thank you very much for your post.
I agree with you that written words exclude us the experience of the tone and intention of the words- besides of the face to face experience. Sometimes it is not easy -especially with the known controversy- to decode intentions. Being non-english speaker also it is not particularly easy to do it.
Apologies accepted.
If you have time, I invite you to visit my blog
Searching Equilibrium
Link
therefore you can understand my position and ideas, mainly in the Introduction. You will see that I also mention the possibility of this kind of situations, of misunderstandings.
With pleasure I can send to you more info on the manuscripts I cited. Because there are several, you can find my contact in my blog.If you are not confortable contacting me by e-mail, please let me know and I can include here some links.
Thank you for your understanding and apologies.I appreciate both very much.
Sincerely
María Luján
Argentina
Phil Schwarz
Apr 8, 2007 at 1:22 am
An important correction: ASA’s 2007 conference will be in Phoenix AZ, not Jacksonville FL, in July.
And, alas, they have indeed invited Andrew Wakefield to keynote. I think ASA is seriously shooting itself in the foot on this one. At about the same time Wakefield will be featured at the ASA conference, he will be facing a disciplinary hearing in front of the UK General Medical Council which may result in the revocation of his license to practice medicine in the UK.
Wakefield took in nearly half a million pounds Sterling in “consulting fees” from lawyers attempting to find proof of harm from the MMR vaccine, in the course of working on and publishing his 1998 paper in the Lancet. That paper was discredited and retracted by his co-authors, but not before it caused a furor in the UK and a sizeable dropoff in immunization uptake there. Wakefield attempted to press a libel suit against the investigative journalist who broke much of this story, but later had to withdraw the suit and pay the journalist’s court costs.
Wakefield left the UK for Texas, where he helped set up an outfit called Thoughtful House.
I say that the choice to invite him to keynote was a serious mistake, and I say so as a board member of ASA’s Massachusetts chapter. I fail to see how this invitation can be beneficial to ASA.
Phil
Apr 8, 2007 at 7:55 pm
“I wish my grandfather were still alive. I could trot him around to conferences and have him put on his Autistic Codger show. He died a few years ago at age 93, and he was as autistic as all get-out. Of course, they didn’t call it autism back then. His two kids are also on the spectrum (and in their mid 70’s) and some of their children and grandchildren are, too.”
Bink, get this around as best you can. It shoots down the mercury poisoning theorists in flames - especially about your grandfather. Was he formally diagnosed with Autism? If so, do you have that in writing? Do the same with your father and uncle (I assume - correct me if I’m wrong!). This is crucial to proving once and for all that Autism existed before the curebies magic date - 1931.
Rochelle
Apr 8, 2007 at 9:34 pm
In regard to a “full history of autism,” I’m reminded of the feral children (those raised by animals in the wild) who are considered autistic and abandoned by their parents in the wild to die.
Or, the children during the 16th and 17th centuries who were drowned because they were believed to be without souls… (Did I read that in Grinker’s book? I can’t remember, sorry.)
John Best
Apr 8, 2007 at 10:12 pm
Phil, Your grandfather could not have been a train wreck or he never would have found a wife. Perhaps Asperger’s or maybe just a little strange but, not autistic.
The institutions will be reopening very soon to accomodate all of the train wrecks who aren’t being cured. Then you can confirm your theory to see if they live past 40.
emily
Apr 8, 2007 at 10:13 pm
Was that in “Not Even Wrong”? I remember seeing a recent book that spent a lot of time on the Wild Child of Aveyron (an interest of mine from years and years ago–I had a theory that there was a connection b/w the Wild Child fascination and Frankenstein, but I digree).
Kristina Chew, PhD
Apr 8, 2007 at 10:25 pm
You’re getting me to think regarding “wild child” fascination and Frankenstein—-I’ll have to let the ideas percolate……… Grinker does discuss “wild children” at the start of his book (I just checked) but I didn’t see a reference to drowning…..
Again, Phil, I would have to add my (maternal) grandfather to the list of pre-1931 autistic persons. A very original man.
And, Phil, have you brought all these allegations against Wakefield to the attention of ASA?
Club 166
Apr 8, 2007 at 11:08 pm
Maria,
The link was broken, but I found your site thru Google.
There’s certainly a lot to get thru there.
I have a very busy 10 days coming up, but will work my way thru your site before additional comments.
Regards,
Joe
Phil
Apr 9, 2007 at 4:05 am
Kristina, I live in Australia so I’m not much help to a US based issue (re Wakefield).
As for you, Best - it was Bink’s grandfather I was referring to, not mine. Just goes to show you don’t pay proper attention to what’s being said. If you weren’t such an meglomaniac I’d get you assessed for ADD!!
And if the institutions were re-opened now they would be far better places than the old ones because more respect would be given to them as human beings. And only those who can’t look after themselves would be admitted - unlike the old days when anyone who wasn’t seen as “normal” would be chucked in there willy nilly.
And for the record - it has been known for HFA’s to have a reasonable sex life! But of course you don’t believe that is possible do you?
Hello - Earth calling JBJ!!
Phil
Apr 9, 2007 at 4:08 am
Oh I just realised you were talking to Phil Schwartz, not me! *embarrassed*
Kristina Chew, PhD
Apr 9, 2007 at 10:10 am
Phil, my apologies! I will be more careful about specifying whom I am addressing. Thanks for the point about institutions and institutionalization.
Joe Herr
Apr 9, 2007 at 11:42 pm
A couple of weeks ago I read where a doctor, active in th field of autism, was troubled about the ear infections and chronic diarrhea in autistic children. I asked if we could cooperate. To indicate that I might have useful information I included two citations which I thought would be useful. Afterwards I realized that I might have ‘given away the farm’. The first work is available from PubMed. Search for “Piggott [au] AND autism AND 1979 [dp]” In the ‘editorial’ he surmised about the ailments associated with autism. Were there a number ‘of synchronized ailments, … or was there a single disturbance which affected multiple body systems resulting in multiple manifestations. When I found that work I was was pleased but not surprised.
I faxed a write up on “ear infections”. It appeared in JADD back in October 2003. All you can get from PubMed is the citation.
It says that sleep causes ear infection. At the end of an apnea the diaphragm collapses and the rapid expulsion of air sounds like a snort. The rapid expulsion of air opens the eustahian tube, and blows gastric juices and infectious organisms into the middle ear.
I have a number of submissions (They get rejected.) I have included that in my submissions.
I do not think the doctor can find all the things which I know.
Bink
Apr 13, 2007 at 6:02 pm
I just checked back on this after a while. Hmm, as for my grandfather being a “train wreck,” well, first of all I would not refer to any human being that way, nor would any Christian. Second, geez, study history a wee bit, mkay? In my grandfather’s time, in his culture and his country, pretty much any male could find a wife and bear children. That is the way it has been throughout most of recorded time. The truth was that it ended up being extraordinarily difficult for my grandmother, but there it is. The scare tactics used by this poster and others like him (you are DOOMED without the goods/services I wish to sell you!!!!) are ridiculous, akin to used car salesmen and bad realtors.
Bink
Apr 13, 2007 at 6:09 pm
Phil, sorry, I did not see your remark until after that last post. I do tell people about this. Anyone who knew him and who can read the DSM-IV instantly recognizes this truth. Many people I know with kids with autism also are able to recognize that they have relatives on the spectrum. It’s not at all uncommon IMO.
Diane
Apr 16, 2007 at 10:16 pm
Know one seemed to mention anything about the data that has been collected on the Amish population and the fact that this disability is not occuring in that segment of our population…mmm…. Why do we not look at this more closely……..
Joe Herr
Apr 17, 2007 at 12:16 am
Diane and Katie: this is the way I think it works.
The ‘single disturbance’ theory of regressive autism
This ‘single disturbance’ theory of regressive autism is: Early weaning followed by vaccination with vaccines containing measles or pertussis is the primary cause of regressive autism. The theory implies that prolonged breast feeding combined with the avoidance of both measles and pertussis vaccines will reduce the incidence of regressive autism.
The basic theory, one of two possibilities postulated by Piggott in 1979 is: “… the possibility remains that there is only one disturbance that in varying degrees affects many body systems and thus manifests in a variety of overlapping syndromes.” Most of these syndromes and autism have another common factor, namely bottle feeding, which combined with Tanoue’s (1989), ”… early weaning may contribute to the etiology of infantile autism” suggests bottle feeding is a facilitating element in autism.
There are two reasons to speculate that obstructive sleep apnea is the ‘single disturbance’. The general profile of gout (uric acid) patients is similar to that of obstructive sleep apnea patients. The general profile for both is “Overweight men and women after menopause”. In addition, obstructive sleep apnea seems to underlie the physical manifestations of regressive autism. Some physical presentations of regressive autism are bedwetting, diarrhea, high uric acid levels, reflux, ear infections, breathing and sleeping problems.
Guilleminault (1985), reports increased respiratory effort can occur even when a complete apnea does not occur and that the muscular effort may cause some of the clinical symptoms. I surmise the diaphragm’s increased effort inflicts ‘blunt force trauma’ on and injures the bladder, intestines, kidneys and pancreas resulting in bedwetting (or nocturia if the person wakes up), diarrhea, high levels of uric acid and diabetes.
Obstructive sleep apnea has an unusual characteristic (snort) which seems to cause ear infections. In 1976 Bluestone presented the concept of a pressure gradient which opens the eustachian tube and insufflates organisms into the middle ear. The rapid expulsion of air (snort) which occurs at apnea termination seems equivalent to the positive pressure gradient.
For reflux, the ligament connecting the diaphragm with the lower esophageal sphincter transfers the diaphragm’s force to the sphincter, opening it while the diaphragm is squeezing the stomach, pushing some of the stomach’s contents through the sphincter.
The breathing and sleep problems are consistent with “sleep apnea”.
The behaviors of autistic patients imply brain injury. During respiratory events there is limited or no air entering or leaving the body. It is speculated oxygen deprivation underlies brain injury in autistic children.
I postulate the sequence of events leading to regressive autism is: 1) The child is bottle fed, 2) the child is exposed to a cause of nasal congestion, 3) the child develops nasal congestion, 4) nasal congestion upsets the balance between respiratory drive and airway characteristics of resistance and patency resulting in obstructive sleep apnea. Palmer, in a 1999 paper, suggested that bottle feeding alters the shape of the skull to one predisposed to obstructive sleep apnea. The skull shape is not altered by breast feeding because the forces used are different from those used in bottle feeding.
In 2000 Corey identified a number of causes of nasal congestion: “The most common clinical syndromes that cause nasal congestion are allergic rhinitis, vasomotor rhinitis, chronic sinusitis, and upper respiratory viral infections (common colds).” Children are not the appropriate age for a diagnosis of gout, obstructive sleep apnea or Type 2 diabetes. This suggests human intervention, not something from nature. It is speculated that the ‘something’ underlying nasal congestion is not ‘wild’ but from society. Both measles and pertussis are upper respiratory viral infections. It is further speculated that vaccinations containing either measles or pertussis can initiate the sequence of: Nasal congestion — Obstructive sleep apnea — Regressive autism.
For many years the role of bottle feeding as a risk for so many ailments has been explained with: “Maternal antibodies protect the breast fed child”. The actual reason seems to be: “Bottle feeding causes obstructive sleep apnea, which in turn has multiple manifestations”. Bottle feeding is a risk even if expressed breast milk is in the bottle because the forces the child will use will be those of bottle feeding.
Who is at fault for autism? Blame technology! Without refrigeration it would not be possible to safely store baby bottles and vaccine vials.
Validation of the “single disturbance” theory will be invaluable in preventing regressive autism and may suggest treatment protocols for existing patients.
Autism Vox » Education and Autism Advocacy
Apr 22, 2007 at 3:07 am
[…] (if not “epidemic“) is more often referred to (consider what was talked about on Oprah’s autism show). You can’t go wrong with calling for the best education for autistic children and—as […]
Katie Wright Does Not Speak for Autism Speaks
Jun 2, 2007 at 12:08 pm
[…] appearance of Katie Wright with David Kirby, author of Evidence of Harm, is this recent […]
Debbie
Jun 7, 2007 at 4:09 pm
I am sickened by the whole thing. Just like corporate America, when the smaller research groups merged and became one larger group, it made more noise as far as publicity but also has created more policital problems within the organization. I don’t know why I am so surprised!
I hope Katie is going with her instinct which is all we parents have to go on for our children.
culvercitycynic
Jun 7, 2007 at 4:23 pm
Instinct? More likely folie à plusieurs.
Bill Sardi
Jun 18, 2007 at 4:09 am
I have written a book that describes why the rise in austism has been paralleled by increases in childhood asthma, childhood diabetes and antibiotic resistance. It explains why it is so difficult to finger mercury as a causative agent. The book is authoritatively referenced. If you would like a complimentary copy of this book (as an ebook), please contact me at bsardi@aol.com
Bill Sardi
Knowledge of Health, Inc.
http://www.knowledgeofhealth.com
http://www.naturalhealthlibrarian.com
bsardi@aol.com
Reindeargirl
Jun 18, 2007 at 3:16 pm
I am the mother of a 16 y/o high functioning austistic son, who never had vaccinations. While I admire Katie’s zeal in searching for a cause, I think that we are overlooking one of the great evils in our environment: radiation. There was virtually no radiation in our environment before Hiroshima, but after that levels of genetically damaging radiation skyrocketed around the world. Today’s children are receiving 50 times the amount of radiation in their food, water and air than their parents. We know radiation destroys DNA and wrecks havoc on our genes. Why is no one questioning what this is doing to our children? Radiation knows no boundaries so children worldwide are exposed and damaged, I wish Katie would see this post and contact me, I have results from studies being done on this issue. But no one is talking about it because it is being whitewashed and covered up by governments and industry.
Have an opinion? Leave a comment: