Geez, I wonder if Larry Moran knows about this. If he doesn’t, I’m going to make sure that he does. I’m also guessing that he won’t be pleased. He doesn’t like pseudoscience at all. He detests “intelligent design” creationists. Based on that, I’m guessing that he won’t like it at all to learn that the Canadian version of the autism “biomedical” antivaccine quackfest known as Autism One is metastasizing from its usual location in Chicago every Memorial Day to held at the University of Toronto in October, as this advertisement shows:
If you live in Canada, the Northeastern United States, the Great Lakes area, or beyond, you will not want to miss this conference from Autism One, Autism Canada, and the University of Toronto’s Dalla Lana School of Public Health. The 2-day main conference will be held Saturday, October 31 and Sunday, November 1, preceded by a 1-day training program for practitioners on Friday, October 30. This conference features two dozen of the most highly respected names in the autism community and provides the most up-to-date information to help your child. From implementing the best biomedical treatments to realizing the benefits of educational therapies to adolescence and adulthood issues, the conference brings you the answers to be your child’s most effective healer and powerful advocate.
I’ve discussed Autism One on multiple occasions before. For instance, the 2008 Autism One conference featured Boyd Haley, the father-son team of autism woo-meisters Mark and David Geier, Mayer Eisenstein, and a number of others. Examples of the talks at that conference included “Over 50 years of known toxicity! (Unsafe at any Concentration)” by Frank Engley, who said this: “NOT GRAM- NOT MILLIGRAM – NOT MICROGRAM- BUT NANOGRAM!” Its keynote speaker was–surprise! surprise!–Jenny McCarthy, whose burning stupid about science is beyond belief and has led her to become, in essence, the celebrity face of the anti-vaccine movement, even leading marches on Washington against vaccines.
In 2009, the mothership version of Autism One made a bit of a splash, but not in a good way. Basically, what happened is that the Chicago Tribune noticed the Geiers’ Lupron protocol for autism, which I had written about three years ago under one of my typically overwrought titles Why not just castrate them? However, in that case, I don’t think the title was overwrought at all, given that the Geiers have been subjecting autistic children to a drug that is a powerful suppressor of sex hormone production because they actually think that testosterone somehow binds mercury and that lowering testosterone concentrations will make chelation therapy work better. Truly, this is some of the most despicably off the wall woo that I’ve ever encountered. it combines bad biochemistry with anti-vaccination pseudoscience, with the utmost quackery of combining testosterone lowering treatments with the dangerous quackery that is chelation therapy.
Then there was Dr. Mayer Eisenstein, founder of the crunchy and “alternative” HomeFirst practice. This is the same guy who said that he had never seen a case of autism in an unvaccinated child in his practice, a case of data-free selective memory so blatant that later the story morphed into his practice having a huge computer database to back up his claim. As I have mentioned before, he is a master of anti-vaccine Quack Fu, including his beliefs that vaccines cause autism, that the government is covering it up, that the American Academy of Pediatrics is hopelessly in the thrall of big pharma, and that “every doctor now essentially in this country has done something as heinous as the Nazis did, unknowingly” because they give vaccines to children.
And, of course, Jenny McCarthy was the keynote speaker again in 2009. Any one want to make any bets against her being the keynote speaker again in 2010? I don’t.
In any case, fortunately, neither Dr. Geier nor Dr. Eisenstein is speaking at Autism One Canada. In fact, Autism One Canada doesn’t appear quite as quacky as the Mothership Autism One in Chicago was. At least, uber-quacks like the Geiers don’t appear to be speaking there. But there’s plenty of dubious science there to go around, starting with the keynote speaker, Dr. Martha Herbert. She shares one characteristic with at least a couple of “luminaries” of the anti-vaccine “biomedical” movement. As Autism Diva and Kevin Leitch pointed out, like Dr. Mark Geier and Dr. Boyd Haley, Dr. Herbert has been slapped down by the courts, which used the Daubert standard to reject her testimony claiming that a child was made autistic by a reaction to mold growing in the condo she was living in. The court found:
Dr. Herbert’s publications indicate that she is an outspoken advocate of increased attention to the possibility of environmental influences. Even she, however, despite that acknowledged perspective, speaks in her published work of possibilities and potentialities, rather than of the ‘reasonable degree of medical certainty’ to which she offers to testify under oath in this case.10 Neither Dr. Herbert’s publications, nor any others cited, identify mold exposure as even a suspected, still less a known or proven, trigger of autism……Dr. Herbert’s method, to the extent the Court can discern it from the materials offered, is a series of deductions based on possibilities…..*Clearly, Dr. Herbert’s method is not generally accepted in the scientific community*. Dr. Herbert’s theory of environmental triggers of autism may some day prove true. It has not yet. Her proffered testimony does not meet the standard of reliability required by the case law, and cannot be admitted in evidence at trial.
Dr. Herbert is a big fan of the idea that autism has something to do with neuroinflammation. Unfortunately, none of her publications persuasively presents evidence for this hypothesis, and lately she’s publishing in bottom-feeding alternative medicine journals articles with titles like Learning From the Autism Catastrophe: Key Leverage Points. Suffice it to say, Dr. Herbert is big on “biomedical” woo, so much so that anti-vaccine propagandist David Kirby likes to cite her and Age of Autism loves her.
The other speakers aren’t much better. I’ll admit, the woo-to-normal ratio isn’t as high as it was in Chicago last May, but it’s still pretty high. It’s just that this is mostly second tier “biomedical” stuff. It’s the second stringers, for the most part. For instance, there’s Dan Rossignol, who’s big on hyperbaric oxygen as a treatment for autism with very little data. There’s Amy Yasko, who’s known for somehow thinking that one can treat autism (and lots of other disorders) with orally administered RNA solutions. I work with RNA all the time. It’s damned unstable. It would not survive even the saliva without being broken down into its components. Actually, RNA won’t survive long in aqueous solution without being frozen at at least -20° C, preferably -80° C. Yet this Dr. Yasko claims that “we have found that by using highly specific solutions of RNAs we are able to enhance our cells natural ability to communicate with one another.”
I’d call Yasko’s woo homeopathic RNA therapy, except that apparently there are real yeast nucleotides in her concoction.
Speaking of homeopathy, there’s a real homeopath there called Rudi Verspoor, HD(RHom), DMH, whose presentation is described thusly:
Autism spectrum disorder (ASD) is a complex disorder with multiple causes, and each case presents its own unique and distinct challenges. The key is to treat the causes and not just the effects. Treating symptoms may provide some improvement but does not provide a permanent solution. Heilkunst, which includes homeopathy, is a comprehensive approach to addressing the multiple deeper underlying causes of a case in a given sequence over time, while using energetic, homeopathic medicines. It provides a clear map of the problem and of how to get out of the swamp of autism spectrum disorders that is safe, non-toxic, and effective even in complex seemingly non-responsive cases.
Well, two out of three ain’t bad, I guess. There’s no doubt that homeopathy is safe and nontoxic. After all, it’s water. But effective? Not so much. Come to think of it, I take back what I said about Autism One Canada not being as quacktastic as Autism One Chicago. Advocating homeopathy definitely ups the ante to anything the mothership could come up with. After all, homeopathy is the One Quackery To Rule Them All.
When I first heard of Autism One Canada, I wondered if this was a case of Autism One and Autism Canada simply renting space at the University of Toronto and trying to coopt its good name, much as creationists tried to coopt the name of the Smithsonian by showing The Privileged Planet there. I’d like to hope that it’s the same sort of deal at the University of Toronto, where such events have to be listed as “co-sponsored” by the host institution in order for the event to occur there. I’ve searched the Dalla Lana School of Public Health at the University of Toronto and haven’t been able to find a single mention of this conference. Alternatively, what may have happened is that someone at the University of Toronto confused quackery for “cutting edge” and somehow was thus fooled into cosponsoring this conference. Personally, I hope for the former, but I wouldn’t rule out the latter. When universities embrace “complementary and alternative medicine” (a.k.a. woo, for the most part), what’s to keep them from embracing (or at least mistakenly viewing as “cutting edge”) something like Jenny McCarthy’s favored autism “biomed” quackery?
Either way, it’s depressing to see as respected an institution as the University of Toronto lending its name, either wittingly or unwittingly, to this nonsense.
71 replies on “Autism quackery at the University of Toronto? Say it ain’t so!”
The ad mentions sponsorship from the SickKids Foundation. (SickKids being the childrens’ hospital in Toronto) I can’t find anything about it on their website, or the foundation website. I know that they have a lot of legitimate autism research, so I’m curious.
I work at sickkids; no mention of this “conference” has been made here. Nor have I seen any notice at the UofT, which I frequent on occasion.
Here’s hoping they’ve just rented space in an attempt to look legit.
@Bryan
SickKids is a fine establishment, you should alert the legal department to the ad. It would be sad if their reputation was tarnished by this conference.
I’m really hoping it’s just rented space. Also, the Medical Sciences building is really ugly, so maybe that will put a damper on the meeting!
I always wonder when homeopaths go on about treating causes and not effects. By my understanding of ‘provings’ and the like, homeopaths try to ‘treat’ illnesses by giving solutions that ’cause’ symptoms in healthy individuals that supposedly mimic symptoms of illnesses.
And so homeopathy treats, say, a runny nose and bad mood and bloodshot eyes, but not the underlying causes of those symptoms.
RNA is sold as a dietary supplement. Here is a series of articles about Dr. Benjamin Frank, who pioneered the use of RNA therapy in the 1970s. Unfortunately there hasn’t been much RNA research since Dr. Frank’s death.
You can contact SickKids at http://www.sickkidsfoundation.com/aboutus/contactus.asp
Since they are a childrens charity I’m sure they will be concerned to find that they have been supporting a group that facilitates anti-vaccine campaigners and other quacks who seek to exploit desperate parents. I dare say they provided a small amount of funding to what at first glance appears to be an Autism support group without looking into exactly what it is they are endorsing.
I’ve e-mailed the SickKids President…might as well go to the top!
Crap
Just closing up the blockquotes…
@Pablo
No kidding. What about Dr. Gina Green or Murray Sidman (ABA researchers)? Or Margaret Bauman (head of the LADDERS program at Mass General Hospital)? People that actually do quality work.
I can’t seem to find mention of sickkids foundation on the website anywhere. Can someone direct me to where it says that?
I just sent a short note with a link to the ad to the Prez of SkikKids. Follow the link Paul Brown posted above and let them know how we feel about this rubbish.
~Greg
In response to Todd W., Gina Green has extensively equated autism with cancer. I don’t see any scientific (or ethical) basis for this kind of claim, which is also made by those promoting quackery.
Dr Green’s work in ABA-based autism interventions does not include even one true experimental design. This is also true of Dr Sidman, and true of very nearly the entire field of ABA-based autism interventions (which has a total of one small RCT, with largely poor results, in 48 years of research).
Those promoting ABA-based autism interventions have successfully imposed on autistics the view that autistics don’t deserve good experimental design–a position also taken by those promoting quackery, who similarly reject the importance of good quality research.
Making claims of effectiveness on the basis of a large quantity of poor quality research, as Dr Green and many others promoting ABA-based interventions do, is not an acceptable standard in non-autism, non-ABA areas.
It is absolutely true that the scientific and ethical standards applied to autistics are far lower (if they exist at all) than the standards applied to nonautistics. This is reflected in public policy, in task force reports, and so on. But this is not a good thing, and definitely underlies the extent to which autistics are subject to so much in the way of bad science and quackery.
@Michelle Dawson
And here I was under the impression that the work done in ABA was effective in teaching kids with autism not only life skills (e.g., how to get dressed, safe/unsafe situation recognition, etc.), but some academic skills (e.g., word recognition) as well. It appears that you find the entire field of ABA to be just as much quackery as, say, homeopathy.
Granted, I haven’t studied it in depth, but have been closely acquainted with those who have. It has seemed to work, from what I’ve seen.
“energetic, homeopathic medicines”–what the heck does he mean by “energetic?”
i suppose they have you drink boiling water rather than room temp water.
In response to Todd W., I agree that behaviour analysts are hugely enthusiastic about the ABA-based autism intervention services they provide. I am not sure why this would surprise anyone.
But in my view, the way to verify (or not) claims of effectiveness is to slog through the relevant scientific literature, with an emphasis on primary sources. I suggest also applying to autistics the standards, for example with respect to reducing risk of bias, that are widely recognized in non-autism, non-ABA areas.
This might be more work, but autistics are–in my view, which is not a common view–worth the bother. Whether those promoting ABA-based autism interventions choose to behave like homeopaths or others similar is up to them.
Sent a message to the prez of Sick Kids. Here’s the contacts for the Office of the President of UoT. Send something ot them as well.
http://www.president.utoronto.ca/officeofthepresident.htm
Orac should make a main post re-posting these links telling his readers to contact the UoT and Sickkids about this!
@Michelle Dawson
I can see the potential for bias to creep in. What I observed in the application of interventions was a clear definition of the target behavior, clear definition of the goal (e.g., reduction of behavior by X), recording of the frequency of the behavior to determine a baseline, careful records of the intervention, etc. Often an ABAB design was used. Implementation of careful record keeping did vary depending on the person(s) involved. My friend was significantly more rigorous in her record keeping than many of the others on her team.
In the end, it did appear to work, when the analysts adhered strictly to the protocols. I’d say that they are at least striving for a more scientific approach, despite their flaws. ABA practitioners were also pretty quick to point out the flaws in facilitated communication.
As to whether people in ABA have performed experiments, I think they tend to leave that to EBA (experimental behavior analysis), focusing instead on trying to implement what EBA comes up with.
I too noticed no mention of the conference on the Dalla Lanna school website. I wrote a note to the General Information contact email address at the school (given at http://www.phs.utoronto.ca/key_contacts.asp) asking them if they were a sponsor, but have not heard anything back as of yet.
In response to Todd W., there are very few EAB (Experimental Analysis of Behavior) papers involving autistics. None of these papers involves a true experimental design.
There are many established (and ever evolving and improving) ways to address known sources of bias. Single subject designs (or pre-post group designs) are not adequate. If they were, then control groups (including controlling for placebo effects), randomization, allocation concealment, trial registries, blinding, and so on, would all be unecessary.
Even setting aside their poor quality (and poor quality should never be set aside), reversal designs (the “ABAB” you refer to) have been found to be “inappropriate” and therefore of “limited value” in autism (Lord et al., 2005).
You may see this as what autistics deserve. I disagree, and again suggest reading the relevant literature (yes, there is a literature with respect to ABA-based autism interventions). Again I also suggest applying the standards well-recognized in non-autism, non-ABA areas, including with respect to the need for good experimental design.
A Board Certified Behavior Analyst is presenting at Canada’s Autism One conference–promoting the effectiveness of RDI (!). Another highly-respected BCBA (and major ABA service provider) is in the leadership of DAN! and works with Andrew Wakefield at Thoughtful House, where she is not the only BCBA. And so on (just to give a few examples).
Speaking of Thoughtful House, brace yourself, they are going to be featured on NBC http://www.thoughtfulhouse.org/newsletters/2009-08.pdf
It’s a shame when several reputable organizations all line up against you, huh. So hard to get your own credibility even when you’re right.
There’s nothing posted at the UofT’s events site. I happen to live across the street from the Med Sci building, so I’ll walk over there tomorrow and ask around.
@21
It is traditional to include a point when you leave a comment.
Todd W
You are wasting your time discussing ABA with Michelle Dawson. She has been on a crusade to discredit ABA and will never accept any study, review or authority as demonstrating that ABA benefits autistic children in the manner you described. She can not and will not change her mind or acknowledge the benefits of ABA no matter how much evidence or how much authority is placed before her. She has fashioned a career for herself out of opposing ABA.
The CREDIBLE authorities, which Ms Dawson is not on the subject of ABA, that have reviewed the research literature on ABA and recommend it for exactly the reasons you suggest include the US Surgeon General’s Office, the NYSDOH, the MADSEC Autism Task Force, the American Academy of Pediatrics, the Association for Science in Autism Treatment, the May Institute, the CARD (Center for Autism and Related Disorders) and the Lovaas Institute.
Ms Dawson has made a career of her strident opposition to ABA for autistic children. She has appeared before the Supreme Court of Canada where she helped governments looking for excuses to deny funding such treatment in Canada, to the Canadian Senate and numerous CBC interviews in an effort to keep parents from obtaining ABA intervention for their own autistic children.
Ms Dawson may be an icon on Neurodiversity web sites but her views on ABA are based on no expertise and no experience that she has made known to the world … unlike the professionals listed above who actually know what ABA is and have used it to help autistic children for many years.
Also, the Medical Sciences building is really ugly, so maybe that will put a damper on the meeting!
Well if the ugliness doesn’t get them, the pervasive free-floating curmudge will! (IIRC, that’s the building where Larry’s lab is) 😉
Mr Doherty, a lawyer, sure is good at making things up. For example, he falsely claims that I supported the government side in a Supreme Court of Canada case, displaying his truly spectacular ignorance and/or dishonesty. Mr Doherty, a lawyer, has made numerous such stupefyingly false claims about my work, my writing, my life, my legal positions, my diagnosis, my colleagues, and so on.
What he hasn’t done is display any familiarity with my easily-available work, or provided genuine, factual, productive criticism. A short response to his boilerplate re ABA service providers, task force reports, etc., is here http://autismcrisis.blogspot.com/2009/07/anomaly-in-autism-intervention-research.html?showComment=1248453990062#c5337019192121592071 (not sure this link will work).
There is some obligation on researchers to share information with the public, something I’ve done when asked. According to Mr Doherty, researchers should not say a word unless we agree with him.
Mr Doherty has repeatedly claimed that I am “anti-ABA” and an “anti-ABA activist” or words to this effect. This is as absurd as claiming that I’m “anti-cognitive-science” and “anti-neuroscience” because I’ve been a very harsh critic of these fields in autism (the fields I most often work in). And this betrays Mr Doherty’s view that ABA-based autism interventions are sacrosanct and above all scrutiny and criticism.
But he goes even further. He has claimed that it is “anti-ABA” to suggest that most autistics (those of us who haven’t received ABA-based interventions starting early in life) are human beings with human rights. He has claimed that it is “anti-ABA” to suggest that autistics deserve recognized standards of science and ethics. He has claimed it is “anti-ABA” to report accurately from primary sources in the ABA literature. And so on.
As I’ve written elsewhere, many of the major human rights laws in Canada have been used to write off and deny the humanity of autistics who have not received ABA-based interventions starting early in life. That would be most autistics in Canada, whose human rights have been denied.
My intervention at the Supreme Court of Canada was about those excluded, written-off and dehumanized (by *both* sides) autistics, of whom I am one. I argued that we are human and should have human rights. As you can see, Mr Doherty, a lawyer, strongly opposes this position, as did both sides at the Supreme Court of Canada.
John (#6) comments:
RNA is a marvelous source of ribonucleotides. Of course, none of the RNA is intact when it arrives in the stomach (let alone the bloodstream).
Too bad that Dr. Frank’s degrees (MD and PhD) did not allow him to discern that his “theories” about aging and how to prevent it were contrary to all that is known (and was known in the 1970’s) about aging and RNA. These articles also mentioned that Dr. Frank died at the age of 57. Apparently, his “anti-aging therapies” were not as effective as he thought.
That’s another place where John is wrong. Thousands of people have been researching RNA since Dr. Frank’s death in 1979. Of course, they haven’t been researching RNA’s “miraculous anti-aging properties”, since those don’t exist.
For those people who didn’t “get” Orac’s comment about RNA being “broken down to its components”, let me amplify them a bit:
RNA is unstable in biological fluids (such as saliva, stomach juices, etc.) because pretty much all cells (human, mammalian, plant, bacterial, etc.) make RNAse, an enzyme that rapidly breaks down RNA into its individual nucleotides. These RNAses take the information stored in the RNA polymer (in the sequence of the nucleotides) and convert it into a heap of individual nucleotides with no stored information.
This process is extremely fast. When I work with RNA, I extract it from cells (or viruses) using chemicals that inactivate RNAses and then store it (in formamide) at -80 degrees centigrade to keep it from breaking down from the residual RNAses that my careful technique didn’t exclude (and from hydrolysis – a spontaneous degradation that happens in water). If the cellular RNAses aren’t inactivated during extraction, they would destroy all the RNA in a matter of minutes.
In both Dr. Frank’s and Amy Yasko’s RNA “therapies”, it is unlikely that any RNA has survived the processing, shipping and storage process (unless it is supplied as a frozen solution in formamide). Even if some RNA – by a “miracle” of random chance – is still in these “remedies”, the RNAse in human saliva would destroy it in seconds.
Even if RNA were absorbed into the blood from oral RNA solution, the individual cells have a strong “bias” against foreign RNA. Cells won’t take up external RNA, so getting RNA into a cell (as in siRNA treatment) requires a “push” – electroporation or a virus carrier. “Foreign” RNA inside the cell triggers a series of responses that are not – strictly speaking – “anti-aging”, such as cell “suicide” (apoptosis).
However, this is all a moot point, since oral RNA won’t last long enough to be absorbed. Oral RNA therapy is useless.
Prometheus
I’m not surprised. Canada is being overrun with quackery. The stollery children’s hospital in Edmonton Alberta has accupuncturists and others nutters on their payroll. They pump out really retarded studies.
http://www.pedcam.ca/PIM-fellowship.pdf
Here’s a description of a course taught to nurses at places like the university of Lethbridge:
http://chp.sagepub.com/cgi/content/abstract/10/2/133
Nursing 2260
Applied Therapeutics
Credit hours: 3.0
Contact hours per week: 3-0-0
This course provides an introduction to integrative therapeutic modalities including conventional (i.e., allopathic), alternative, and complementary therapies used in health care and the pathophysiologic, psychologic, energetic, and spiritual basis for these therapies. The nurse’s role in promoting quality of life through appropriate use of various treatment modalities and dealing with implications and effects is explored.
Prerequisite(s): Completion of all Year One requirements in the NESA B.N. program
OR
Completion of the first semester in the B.N. After Degree program
Note: This course is offered as Nursing 290 at Lethbridge College.
http://www.uleth.ca/ross/courses/nursing.html
Science???? PAH!!! What the frac is SCIENCE???
Here’s a very short response to Mr Doherty’s boilerplate about “credible” sources (links for many of the sources are here http://autismcrisis.blogspot.com/2009/07/anomaly-in-autism-intervention-research.html?showComment=1248453990062#c5337019192121592071 ).
The May Institute, the Lovaas Institute, and CARD are all ABA service providers. CARD’s leader, Doreen Granpeesheh, BCBA, is in DAN!’s leadership and works for Andrew Wakefield. ASAT’s purpose is to promote ABA-based autism interventions.
The Surgeon General, MADSEC and NYSDOH reports (all promoted by ASAT, and by numerous ABA service providers) are all a decade old and none cites even a single RCT of ABA-based autism interventions. That in itself is remarkable.
The sole prospective nonrandomized controlled trial (with an N of 10 or more) cited in these reports is Lovaas (1987; the N is 19), which is dependent for its results on the use of aversive procedures (systematically hitting preschool children–as young as 19 months–“hard,” see Leaf & McEachin, 2008). That too is remarkable, in its way.
The MADSEC report further cites as “best practices” a large-N (by ABA standards) single subject design, Hagopian et al. (1998), in which basket holds are used as aversive procedures. As the US GAO has documented, basket holds risk being fatal. Again, it is remarkable that anyone would see autistics as deserving of these kinds of standards.
Re the Myers et al. (2007; the AAP report, which is a narrative literature review), with respect to ABA-based autism interventions, there is a failure to report accurately from primary sources, there is the inclusion of a large number of papers dependent on the use of aversive procedures, and there is no consideration of the quality of the research (even the basic research design of some of the papers is inaccurately reported). This is just to bring up three very basic standards of science and ethics.
I agree with Mr Doherty that autism advocates like himself regard recognized standards of science and ethics, even very basic standards, as totally non-credible, if not reprehensible, and as something to oppose when it comes to applying them to autistics. As Mr Doherty demonstrates, autism advocates have successfully imposed their views in this respect on autistics, including through lobbying and litigation.
Unsurprisingly, this has allowed a flourishing of bad science and quackery (see original post… and it is now routine for behaviour analysts, and some FEAT groups, to work hand in glove with DAN!-type practitioners).
Let me know what you find out. If anyone is at the School of Public Health, please see if you can find out anything.
From the bottom of the ad (a one-page flyer pdf file) Orac quotes:
Good company to keep.
“Geez, I wonder if Larry Moran knows about this. If he doesn’t, I’m going to make sure that he does.”
Have you contacted Larry Moran, and if so, what is his reaction?
@Michelle Dawson
The information you cite, about basket holds and similar aversive procedures, are not reflective of the ABA practices I saw. The center that employed ABA banned basket holds and other restraints that put people at risk, implemented deescalation strategies to avoid the need for any holds altogether, took a person-first approach (e.g., changed language to be “person with autism” rather than “autistic person”), strove to reduce wherever possible the psychotropic meds that kids were on when they first came to the center and so forth.
There was a very strong effort to act with humanity toward the children that were there, to teach them basic skills (nearly all were lower-functioning on the autism spectrum) and to try to give them as close to a home-like experience (for the resident students) as possible.
I do not deny that there are some in the ABA field who go for nutty ideas. It’s still a relatively young field, and they do need to put a bit more stringent guidelines in to separate the wheat from the chaff, as it were. However, the ones who are at Thoughtful House or go in for DAN! crap should not invalidate the entire field. If that were the case, then Mark Geier’s antics would invalidate genetics.
ABA, as far as I understand it (and again, I did not study it directly), is not trying to “fix” autism. They are, admittedly, treating the symptoms so that people with autism can survive with no or minimal assistance where possible. The people I knew who worked in ABA settings strove to ensure the integrity of their clients and to help them learn the skills necessary to transition to a mainstream setting and beyond. Perhaps my experience was unique.
Michelle, if you view ABA as unethical and lacking proper scientific rigor, what treatments would you put in its place? What would you suggest for those who are not high-functioning? Given the options out there (DAN!, chelation, FC, medications, etc.), ABA seems, to me, to be the only one that has any basis (even if only tenuous) in science and that appears to actually do something productive, without putting people in physical risk or holding the potential for false law suits (i.e., allegations of abuse from FC).
I’ll try to find that Lord, et al., paper you referenced and give it a read.
Heh…the med sci building might be ugly, but the view they show there in the ad I swear is from Hart House. -Much- prettier.
Crap — UofT is where I got my PhD. I’ve sent a strongly worded email of complaint to the President, for all the good it might do.
To Prometheus: I have no experience working with RNA in a lab setting. But there are several places on the internet selling RNA powder extracted from yeast. This is the form sold as a supplement. The way to overcome the RNAse enzyme system is by taking a large enough dose. Dr. Frank was giving his patients 2 to 7 grams of RNA at a time. From the Dean article:
“Dr. Frank believed that one cause of inadequate concentrations of RNA and nucleotides for repair and production of energy is an age-related increase in enzymes that destroy nucleic acids (i.e., nucleases—specifically, ribonuclease, which breaks down RNA). As people grow older, ribonuclease enzyme activity has been reported to increase. Consequently, just as the requirement to repair damaged cells increases, the substances required for this repair (nucleic acids) are being degraded by higher concentrations of destructive enzymes. Consequently, Dr. Frank believed older people have an even higher requirement for nucleic acids than younger people. Thus, the older we get, the greater our need for nucleic acids, both for replacement and for repair.”
Here are the second and third articles in the series on Dr. Frank.
Eoisine @ 28 – Lethbridge College is not connected with the University of Lethbridge – the latter is real University and the former is more of a community college although it does grant degrees in some of it’s programs.
katie:
Oh yeah, that’s the Hart House quad for sure.
Suggest you send a note to the Provost at the University. provost-at-utoronto-dot-ca. The Provost is responsible for academic programs and operations for the entire university.
@Michelle Dawson
I’m an adult autistic, undiagnosed until my late 30’s, much like yourself. I’ve read a few of your essays, and a few comment threads from your blog. I mostly agree with your views on Neurodiversity, and absolutely agree with your opinion of aversives.
I don’t agree with your assessment of the evidence on ABA’s effectiveness, though. No research is perfect, but the studies don’t strike me as fatally flawed. RCTs may be the best quality evidence, but they aren’t the only acceptable evidence. And RCTs have been done, here’s a review of 11 studies, including 2 RCTs, http://www.ncbi.nlm.nih.gov/pubmed/19143460?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=4&log$=relatedreviews&logdbfrom=pubmed.
I’m not arguing for or against the studies conclusions, BTW. I’m not convinced of ABA’s effectiveness. Like you point out, science is full of small scale positive studies which failed when put to larger scale tests. But that’s not unique to ABA or autistim studies.
I just really don’t see how these studies fall short of acceptable standards, either of design or ethics. Perhaps you can clarify for me.
But what I really wanted to comment on is the level of rancor and hostility in your writing. Every person who questions you in the slightest gets attacked with an accusation that they oppose science and ethics for autistics, that they don’t see autistics as human, or some similar variation. Even Todd W., who was nothing but polite, got the accusation that he might “see this as what autistics deserve.”
You also misrepresent other people’s arguments, like you did Harold Dougherty above. Worse, you sometimes put words in their mouths which would be highly offensive IF they had actually said them.
For example, on your blog you said, “I also naively suggested to Dr Green–who is a mainstay of ASAT and the Behaviour Analyst Certification Board–that parents should accurately be told their autistic child is not more difficult than, but simply different from, a non-autistic child. She vehemently responded that being different is the worst possible thing.”
Admittedly, I was not there, but I find it highly doubtful that those were her actual words, and not your characterization of her opinion, in the same way you mischaracterized Harold Dougherty’s above.
Frankly, you come across as a crank. An intelligent, well researched crank, a crank with some good points and some valid arguments, but a crank, nonetheless.
@Leaford
Thanks for the support. I debated whether or not to comment on that line (“see this as what autistics deserve”), but couldn’t decide if Michelle was saying I think it’s what they deserve because people with autism don’t deserve treatments that, in her opinion, would be more ethical and scientifically based, or if she meant that I think it’s what they deserve because of the paucity of other available options. In the end, my thought is that people with autism deserve whatever resources help them acquire the skills they need to live with as little assistance as possible, just like any other person.
I read that part of her essay, too, and tried to find her reference for that comment, but no interview with Dr. Green was listed in the References section. At any rate, answers to interview questions are one thing, but what the person concludes in a scientific publication is what should really be evaluated. Their opinion, stated in response to an interview question, may certainly paint the person in a less than favorable light, but it says nothing about whether their scientific conclusions are right or wrong.
In response to Todd W., you can verify what I wrote by reading the relevant reports and papers, which are widely used as a way of promoting ABA-based interventions. And of course, you need to read all the primary sources.
For example, one of the papers cited is an AAP policy paper, which should give anyone pause (though apparently not, and a good question is, why not?). I am not sure why it would be irrelevant to write about it, or any other published paper, or about the other major reports and papers cited as evidence for the effectiveness of ABA-based autism interventions.
I totally agree that these reports and papers may have nothing to do with ABA programs in practice.
But this then raises the question of why totally irrelevant evidence keeps being cited–including in major policy papers or reports, in litigation and and recommendations for “best practices”–as the evidence for the effectiveness of ABA-based autism interventions.
In other words, ABA-based interventinons have been promoted and demanded, including in litigation, on the basis of evidence you are now saying is largely or entirely irrelevant. You may not see this is problematic, but I do.
I write about the published research in various areas, including ABA-based autism interventions. I also write about legislation, litigation, jurisprudence, and about public policy.
What I write about these areas can be verified by reading the relevant documents. Autistics do live the consequences of the published scientific literature, of “best practices” reports, of public policy, the law, the jurisprudence and so on, as well of decisions by the U of T to host an Autism One conference.
What I recommend is that recognized standards of science and ethics should apply to autistics. As you can see that there is a lot of opposition to this. So long as there is, bad science and quackery will flourish and no one should be surprised.
Here http://autismcrisis.blogspot.com/2009/07/anomaly-in-autism-intervention-research.html I write about better quality autism intervention research (for one example).
My suggestion is that false and exaggerated claims about autism treatments and interventions should not be made, and that good quality research should be conducted. If this had been put into practice 30 or 20 or even 10 years ago, we would now have a much better idea of how to help (and how not to harm) autistics. I also suggest Tyrer et al. (2008) as an example of what good experimental design can reveal about how to help autistics (and others).
As I point out in the comments: “There are areas of autism research that do have good quality research. And the results have largely been that interventions which are shown to be effective in poor quality studies are not found to be effective when subject to good experimental design. Often there are strong placebo effects. I do not think this evidence should be ignored.”
John (#26) states:
If Dr. Frank was giving “2 to 7 grams of RNA at a time” [my bold], then we can be fairly certain that he was using a bulk RNA prep from yeast. However, even if the RNA was able to make it past the RNAses in the saliva and pancreatic juices (unlikely, even at those doses), it still has to get into the bloodstream and then into the cells.
I note that Dr. Frank never tested whether any RNA made it into the bloodstream (let alone into the cells), so he was simply assuming that “2 to 7 grams” would be adequate.
This also brings up the question of exactly what Dr. Frank (and Amy Yasko) think that yeast RNA are going to do, even if they are able to get into the cells.
The overwhelming majority of the RNA will be ribosomal RNA (rRNA), which is similar enough to human rRNA to function in our cells but would still be recognized as foreign and degraded.
The next largest (by number) will be transfer RNA (tRNA), which carry amino acids to the ribosomes to be made into proteins (a gross oversimplification of the process). These, too, are similar enough between yeast and human that the yeast tRNA would work in our cells, but so what? Even senescent human cells make enough tRNA.
The next most common RNA type would be the messenger RNA (mRNA), which are the transcribed (and, in eukaryotes like yeast and humans, “edited”) genetic code used to make proteins. We most certainly wouldn’t want this RNA type in our cells, since they would cause the production of yeast proteins in our cells.
The bottom line is that all of these oral “RNA therapies” are simply silly in light of what we know about the function of RNA in cells. You don’t want to introduce “foreign” RNA into your cells for a variety of reasons. Fortunately, the body’s defence against foreign RNA is formidable, so none would be taken up by your cells.
Oral RNA “therapy” is useless because intact RNA can’t be taken up by the cells in nature (except under special circumstances, like infection with the polio virus). Oral RNA “therapy”, fortunately, is also very safe – for the very same reasons (unless you happen to be allergic to “yeast”).
If you want to spend thousands of dollars for “treatment” that is no different from eating a few packages of baker’s yeast (except, of course, for the cost), you are free to do so. Don’t complain if people laugh at you, though.
Prometheus
In resonse to both Todd W. and Leaford…
TMoB, the 2004 informal article you both refer to, has full sources and notes in which Dr Green appears (more than once). You are free to say these don’t exist, but they are not hard to locate.
I accurately reported Dr Green’s views (something she has not disputed), though again you are free to say what you wish. Dr Green is a famous public figure who is used to speaking with the public.
TMoB was worked on and written in 2003 (it was not posted until 2004), before I was a researcher, and also before I had a computer. All of it was composed in email in short patches of time on public computers. How I came to speak with a lot of researchers, including behaviour analysts (I did not single them out), is a long story that has been reported in various places.
TMoB was an attempt to write about a subject that had not been written about before (the ethics of ABA-based autism interventions) at multiple levels–popular (media stories, etc.), legal, scientific.
But when I first starting speaking with researchers (at the same time as I was starting to read the literature), I did not know what I was going to find. I had no views in any direction about ABA-based interventions or any other area of autism research. I did not know that the major unaddressed problem was going to be ethics. It was not by far the only problem, but it was what stood out.
I can spot errors in TMoB that I’ve corrected in my later writing (I always ask anyone who finds factual errors in what I write to point this out, please), and I would write it very differently if I wrote it now (see my blogging for how my informal writing now looks), but for all its flaws, its basic point, which had not before been made, remains valid. I summarizes this point here http://www.autistics.org/library/dawson-response.html :
“I point out that ethical standards which have improved the circumstances of all other persons would equally benefit autistics, and would also improve the state of the science.”
Where did I say that the evidence is largely or entirely irrelevant?
As to alternative interventions, the link you provided didn’t mention the specifics of the PACT research, and I haven’t had time to look at the studies referenced in your link.
Neither of us said that they do not exist. Stop putting words in our mouths. My point (I won’t speak for Leaford) was that you mentioned a conversation/interview with Dr. Green, but your references did not list that interview. Admittedly, I skimmed the article, so I missed the phone reference in the notes. If you revise that essay, I would suggest putting all interview citations in the reference section.
In response to Leaford, see above re Dr Green. Also, what you claim about when I was first diagnosed is false.
There is only one RCT where the intended comparison between randomized groups was actually carried out. In another attempted very small RCT (Sallows & Graupner, 2005), the authors made a post-hoc decision to lump their groups together, resulting in an uncontrolled trial. This can be verified by reading the paper. I generally suggest reading the ABA literature in autism, including peer-reviewed papers, the major manuals, the major reference works, and so on. I cannot provide a full criticism of this literature in blog comments, though you will find a lot of relevant information on my blog (with full sources and references), and also some relevant information in my formal work.
My suggestion is that those who demand ABA-based autism interventions should do so accurately (with respect to the existing scientific literature). Even this would have been enough to make life a lot better for autistics. I also suggest that those demands should be made ethically and respectfully. For example, they should be made without writing off and dehumanizing a very large number of autistics.
I’ve noticed that these suggestions are considered not only unacceptable but actually rude and reprehensible. I haven’t been given any factual basis for this though.
Mr Doherty has written a great deal about me and my colleagues. He has posted many comments on my blog (I recommend reading them). Mr Doherty has strongly opposed my position in Auton, which is what I (accurately) refer to above. Mr Doherty has yet to provide any factual, genuine, productive criticism of my work or writing, and he continues to generate truly amazing amounts of false and derogatory information about me and my colleagues.
Pointing this out is not “rancor” or “hostility.” It is accurate and easily verifiable.
When individuals or oranizations promote, defend, or support certain standards that in their view should be applied to autistics or are good enough for autistics, I sometimes point this out. This is not putting words in other people’s mouths. I’ve also tested my ideas through peer review. In your view, this makes me a crank. There isn’t anything I can do about that.
In response to Todd W., you wrote “no interview with Dr. Green was listed.” Leaford wrote: “I find it highly doubtful that those were her actual words.” This is what I responded to.
Also, you wrote,
“The information you cite, about basket holds and similar aversive procedures, are not reflective of the ABA practices I saw.”
This and other statements you made in this direction, indicating that the evidence invariably cited in support of ABA programs is inconsistent with practice, were what I responded to. I’m not going to repeat what I wrote above on this subject.
I’ll add that there is no published evidence (there is not even a single group design) in support of ABA-based autism interventions which do *not* have as their goal to suppress or eliminate autistic traits and abilities–which are considered inadequate, dysfunctional, maldaptive, etc. (behavioral “excesses and deficits”), and therefore unwanted–and to replace them with desirable typical skills and behaviours.
Re the PACT, I would not expect anyone to fully describe a complex manualized early autism intervention in a short blog post. The full description of the intervention would be in the manual, which I mention. Manualization is a very good idea for this kind of intervention. There is also a cite for a pilot RCT, published in 2004, where you can get information about the intervention, and like all published papers, there is contact information so you can contact the authors if you have any questions. I also provided a link to the PACT website, which provides more information, including contact information.
I forgot to mention that a lot of autistics (self included) have specifically rejected person-first language, for very good reasons. You can find a lot of writing about this online, dating back a long time.
Thanks for bringing this to my attention. Excellent post!
If someone were to do their research they would find that the conference is located here: Location
Main Conference: Saturday, October 31 – Sunday, November 1
University of Toronto, Medical Sciences Building, 1 King’s College Circle, Toronto, ONT, M5S 1A8.
Furthermore the attitude and opinions expressed in this article and blog demonstrate a huge amount of ignorance about the effectiveness and reasonsing of many different types of treatment that is affective for autism. I am still waiting for conventional thought to come up with a reason why so many children are suffering form this syndrome where before 1995 is was never heard of. For the most part we are all walking in the dark and for one group of people to lump together all those things they don’t understand and call it Quackery just demonstrates their ignorance rather than saying anything real about these forms of treatment. I take it you are all educated people. In order to see anything clearly one must put your own biases aside. and just like world religion, and raising children there are many ways to view things and do things. Medical snobery is close to racism. keep your opinions to yourself and let the proof speak for itself.
“I am still waiting for conventional thought to come up with a reason why so many children are suffering form this syndrome where before 1995 is was never heard of.”
I knew of autism at least as early as the mid-80s. Before that, I didn’t know about, mostly because my priorities revolved around what happened on Transformers that week.
Temple Grandin was diagnosed with autism in 1950 (at the age of three).
Autism was certainly heard of before 1995, even if you personally had not heard of it.
“keep your opinions to yourself and let the proof speak for itself.”
Which is exactly how science works. Unfortunately, for the interventions you allude to, there is no proof. That doesn’t stop people hawking them to desperate parents, even though many of these therapies are expensive (HBOT), difficult to maintain (special diets and/or supplementation), hazardous (chelation), or downright damaging (chemical castration).
Show me proof (not just a testimonial) that chelation really does cure autism, and not only will I stop criticizing the therapy, I’ll probably considering having it done to my daughter. And whoever finds the proof will probably be in the running for a Nobel in the future, since it would mean revolutionizing what we know about biochemistry and neurology. However, I’m not going to hold my breath waiting for such proof.
To Prometheus: I’ve been taking supplements every day since 1972 (I’m 56), and am in excellent health. I don’t mind being laughed at. Incidentally, this is the product I’m familiar with. It’s a pure extract (100% RNA) with only trace yeast residues.
I wrote an email to UofT complaining about this conference, and this is what I just recieved in response:
“Thank you for your email concerning the conference: Changing the Course of Autism in Canada, organized by Autism Canada Foundation in collaboration with the Dalla Lana School of Public Health University of Toronto and Autism One.
The goal of this conference is to provide a respectful forum for parents, therapists, doctors, researchers and individuals with Autism Spectrum Disorder to share, learn and work collaboratively to expand knowledge of treatment interventions for Autism. There will be a cross section of speakers.
As part of SickKids Foundation’s National Grants Program, support is offered for conferences, workshops or symposia which are relevant to the health of Canada’s children. The purpose of the conference grants program is to support events which are organized by and/or for families with children with health challenges.
The review process is competitive and funding is limited, with a maximum of $5,000 per grant. Each conference grant application is assessed in terms of its relevance to the health of Canadian children up to 18 years of age, as well as for its fit with the conference grants program goals.
The Foundation sees value on information sharing between medical staff, community organizations, and families. It is important for families to have opportunities for open dialogue with health professionals in order to get an understanding of current research and practices.
The Foundation takes a neutral stance on complementary and alternative health care. We actually have a history of funding research on complementary and alternative health care for paediatrics. The use of complementary and alternative health care products and therapies are on the rise across Canada and there is little research on the safety and efficacy of many of these treatments and products for children and youth, as well as the effects of the interactions between natural health products and conventional medicine. For this reason, the Foundation has taken a first step to build research capacity on which to base practice and policy in these areas.
To this end SickKids Foundation funded Autism Canada in the amount of $5,000 to support their conference: Changing the Course of Autism in Canada.
I hope this helps to answer some of your questions.”
==============================================
Huh. So while foundation stays ‘neutral’, the prestige of an organization such as UofT appears to endorse a whole lot of woo….
I received the same response from UofT and have a similar reaction as Anna.
This is the response I sent:
Ms. Gilliland,
Thank you for your response, I appreciate the time spent explaining UofTs involvement in this conference. I cannot, however, agree that funding from SickKids Foundation is neutral in this case. The presenters invited by Autism One are cranks who’s alternative methodologies and “treatments” are based on faulty science. I can’t put it in clearer terms than this. You need only do some basic research on-line to find this to be true http://www.autismone.org/.
How can a hospital with as stellar reputation for caring for children possibly support a group that advocates anti-vaccination? TThere is no credible science to back up the assertion that vaccines cause autism and mountains of evidence to the contrary, yet Autism One shamelessly promotes this idea. Well meaning parents fall for this rubbish and as a result childhood diseases once practically unknown in our age are on the rise. A group like this craves, no requires, support from well intentioned respectable names such as SickKids to lend credence to their faulty reasoning and bad science. Conferences like these do not raise awareness of where the medical community is on such conditions as autism, but provide an undeserved respectable forum for quacks and pseudoscience.
Alternative and complementary medicine is a canard based on faulty science and methodologies that have been proven over and over to not work. Real medicine is tested by proven to be effective by real science, our children cannot be allowed to be endangered by the likes of Autism One.
I cannot in good conscience continue to donate to The SickKids Foundation if you support this kind of bad medicine.
Sincerely,
Greg
I got the same response. It appears to be a form letter.
Sick Kids actually funded this? Sickening.
John (#51) comments:
I’m glad to hear you don’t mind being laughed at. I haven’t been taking supplements since my birth in the mid-1950’s and I’m also in excellent health – no medications, no medical problems, not even allergies.
The problem with anecdotes, John, is that they can cancel each other out.
John continues with an advertisement:
As I mentioned above, there is no conceivable reason to expect that taking yeast RNA will have the slightest positive impact on your health. As far as your product being “100% RNA”, that is something that any undergraduate in my lab can achieve – it’s not impressive.
If taking overpriced yeast RNA makes you feel better, don’t let reality bother you. For those people who are wondering if yeast RNA can make you healthier, it won’t. You’re free to waste your money, if you like, but the only thing that yeast RNA will do for your health is increase your chance of a gout attack.
Prometheus
Prometheus – you may be in perfect health, but do you mind being laughed at?
Autism Is BOTH mr/dd and Einstein and also the sublevel building blocks of the mind all figured out. Autism has never been in a text book before and it is the building blocks of the mind. Those in autism circles will ‘know’ the Lack of eye contact and during that time our OPTIC vision is off and we are thinking in pictures- brain generated images.(or should be) Once we learn those images and how to use them and how to work them into normal thought we come out dare I say it, ‘Normal’. We all(200 of us or more) add to the work of Temple Grandin author of Thinking in Picutres.
Sadly what we have figured out has never been in a text book before and it is the long-hand version of human thoughts. I say sad because all the experts and normal thinkers use the Shorthand human thoughts thus the impass in research and the WHY man cannot figure out his own mind. If autism/psychology research would care to listen we can another 1000 chapters to the psychology text books.
I grew up in Special Education ,became a super geek (savant) and now turned out mellow ,like many in autism have. Modern autism jumps threw hoops to hide us.
Rich Shull Inventor of The Turing Motor a Green triple Hybird car motor featuring one central spinning cylinder that runs on compressed air, gas and Electric , author of autism’s banished book Autism Pre Rain Man Autism.
You sir, are what we in Montana refer to as a boorish ass!
Since you are so highly knowledgable about autism, its causes, and effective treatment, then by all means, give us your immaculate wisdom!
As parents of autistic children, we are not looking for quackery, rather, we pray for anyhting that will potentially help our precious children.
Whether you like it or not, these people you refer to as quacks actually offer something USEFUL to us and our children, which is FAR more than you seem to be able to present, and cetainly more than standard allopathic medicine has to offer!
Your blind faith denial of the risks and side effects of vaccines is mind-boggling! You are either a poser or just plain stupid. Everyone in medicine KNOWS that vaccines carry significant risks!
I recall a physician years ago who came up with the preposterous idea that gastric ulcers were caused by a bacterium, helicobacter pylori. What an idiot, huh? Except he was right, and the entire medical establishment who initially ridiculed him was wrong!
Oh, and just in case you think I’m ‘just another ill-informed, ignorant parent’ pinning their hopes on quackery, rest assured I am not. I practice emergency medicine.
Now, I’m anxious to hear your ideas for effectively treating this devastating disorder. I’m waiting…
Cliff:
H. pylori is a stellar example of the scientific method at work. A researcher noted a novel association and investigated it using solid scientific methodology. He published his results in a peer-reviewed journal. Since it was a radical new idea, it was met with expected skepticism. However, because he presented all of the necessary information, other researchers were able to replicate his results, and then build on them so that within the decade, treatment for gastric ulcers had been changed.
People pushing all of these alternative ideas about autism have not none that.
None.
Why don’t we have better treatments? Because scientists are still researching the subject and will honestly tell you that they don’t know everything.
The frauds will present themselves as if they do know everything and will dishonestly say that they have an answer when they don’t.
I have received a reply at last from the Dalla Lana School, which simply states that they will be posting information about the Autism One Canada conference soon, and that one of their faculty is presenting at the conference (Prof. Marianna Ofner). The reply did not say whether or not the School was a sponsor. I have asked back with that specific question again. I note, however, that the Autism One Canada conference web site no longer mentions the Dalla Lana School as a sponsor, so I am speculating that the answer is no, and that the School asked the conference to take their name off.
As to Prof. Ofner, I cannot tell about her background in autism. It is not listed amongst her research projects or publications, which seem to be more about antibiotic resistance. She does list autism as a research interest. She also is a member of several autism organizations Autism Ontario (Toronto chapter link) and Families for Early Autism Treatment of Ontario, which appear “sensible” rather than “woo” to my layperson eyes.
Just received a note from the exec asst to the director of the Dalla Lana School stating that the School is not and has never been a sponsor of the Autism One Canada conference, and that they had requested the misleading line at the conference website be removed.
“Now, I’m anxious to hear your ideas for effectively treating this devastating disorder. I’m waiting…”
No need to wait, just pop over to the OT, SaLT, psych, sens nurse and counselling departments of your local LD/MR services and ask them what they do with people with autism.
And don’t forget to tell them that you think their work is useless whilst you’re there.
After skimming through most of the comments here I am sickened by what you have written. It seems that most of you only think about academic research and have no down-to-earth experience with trying to help an autistic child.
My child spent 16 months at Sick Kids when born. I am very aware of what medical science did to keep her alive,yes, but the lack of awareness that existed when she was given just about every vaccine available 3x the normal doses and endless treatments and the number of times insufficiently trained staff almost killed her. The place may be a world renowned institution but it is very limiting when it comes to trying to provide or improve quality of life.
After her first hospitalization shortly after being discharged at 16 months, one doctor told me that my child would be in and out of hospital for the rest of her life. I said there was no way I was going to tolerate that. Due to the limits of medical science, I turned to alternative therapies and it was with these I was able to find quality of life for her. (If you want details, I can provide plenty…just ask!)
My daughter was not born with autism but something in her genetics and her environment (probably together) triggered her to develop autism before she turned 2 years old. With the help of a fabulous autism program (I wouldn’t touch IBI with a ten-foot pole) and biomedical treatments, I have a little girl who now makes eye contact, is talking, learning to play, and takes piano and ballet lessons.
This conference is happening because parents need to be informed that autism does NOT have to be a life sentence; children can be cured of autism (I have never heard of a child being cured by IBI alone); parents need to know that there is HOPE and alternatives available to help their children. Places like the Geneva Centre and Surrey Place do not readily provide this information and if parents are fortunate they come across it somehow. I still meet parents of autistic children who have never heard of these amazing alternatives and even small things they can do to help their children start to feel better and more comfortable.
I expect that if any of you had a child with autism you’d stop wasting your time discussing whether this conference should happen, whether Sick Kids and the University of Toronto foundations should support it, and you’d start looking at all possibilities that exist so that you could help you child reach his or her full potential.
If you’d like to come, meet, and participate in the healing of an autistic child, I’m always looking for people to participate in my daughter’s program. Perhaps with some experience you’d start singing a different tune.
I think “A Wise Mom” and I have very similar kids and run very similar programs. Experience is the only thing that counts with Autism and parents have the most experience. I have done biomedical treatments on our child, including Chelation. You cannot tell he has autism. Don’t bash something if you haven’t tried it. How come when people have cancer they go to great lengths to be cured. Why is autism any different? Is it because autistics are “strange” and not “normal” and “well behaved” like the rest of us? I love my kid and he is getting better and I have tried everything to help him and a lot of the biomedical treatments we have used has been very instrumental in his recovery. In short, people can say what the hell they want. I am busy helping my child have a better life. And like “A Wise Mom” I too would not touch ABA or IBI with a ten foot pole. Tried it – it was not helping my kid and the kids it does help just turns them into robots.
You are wrong, there are many, many autism moms and dads on these threads.
ABA doesn’t make my son a “robot” and I resent your self-righteous tone. But I would certainly not expose my son to a hair-brained, untested and dangerous therapy like chelation.
Although I am sure you will not care what I say, because you already know everything. Of course your child’s autism isn’t genetic, then there might be something ‘wrong’ with your genes.
You can endanger your child all you want with your ignorance, go ahead make them “normal”. I will help my son reach his potential through proven therapy. There is nothing wrong with my son, especially not anything I want to “cure”. He is perfect the way he is, we will work through the difficulties as they come.
I don’t know why you are preaching your inane crap here, you will get no takers, or sympathy.
Don’t know why those links didn’t work. Here they are:
https://www.respectfulinsolence.com/2008/09/chelation_study_for_autism_tossed_on_the.php
http://www.post-gazette.com/pg/05237/559756.stm
Kristen, your son is lucky to have such a loving, rational mother.
Hi, just realized your blog’s RSS doesn’t seem to be operating correctly. Just wanted to let ya know.
Lying spammer selling toxic stuff.
Autism is incredibly interesting. I once took care of a child with it and have become intrigued with it ever since. I wonder if nutrition in the mother has anything to do with it. Would it be wise to suggest that pregnant or nursing mothers take a metagenics ultrainflamx or other supplement, to promote their own health as well as the health of the fetus?
Ms. Germaine, perhaps you should your question on a less ancient blog article.
And maybe you should lurk a bit to see how things work around here. That way your question will not look like supplement spam.