11/20/2010

Definitions are Tricky Things: Age of Autism, Wakefield and Faith in Persons over Science

Folks seem to have a problem with definitions.

[slan-der] 
–noun
1. defamation; calumny: rumors full of slander.
2 .a malicious, false, and defamatory statement or report: a slander against his good name.
3. Law . defamation by oral utterance rather than by writing, pictures, etc.


One commenter at the Wakefield piece writes, "It is unbelieveable that everyone here is so supportive of Dr. Wakefield, whose unethical and unscientific "study" led to the deaths of many children from totally preventable diseases. He has proven nothing."


This comment causes Stagliano to write, "Dear Concerned Parent (not concerned enough to use your actual name while casting aspersions.) Your comment borders on slander - had you read his work you'd know the facts of the case. Kim"


Nope, I don't think, based on the definition listed at the top, that it "borders on slander" and I sure don't think reading Wakefield's book or retracted studies will give us the facts of the case. The GMC hearing report will provide the facts, though.


Time again, the folks over at Age of Autism display unequivocally that they believe assertions and anecdotes over scientific research and legal findings.


Plus, the whole dig at anonymous is rather ridiculous from a site that allows many anonymous supporting comments without ever asking for an id, oh, like their commenter of the week, "Deb in IL" and others like:


patrons99
JenB
mitomom
bensmyson (yes, he's easy enough to figure out, but it's still anonymous/pseudonymous)
Whatever Name You Want To Give Me Today
Jen
parent101
polliwog
Vaccine.explorer


etc., etc., 


So, really?

12 comments:

kathleen said...

Has anyone at AoA posted said facts of case..the facts they say prove Wakefields innocence? I did read the GMC hearing report and I can't find the section that would lead to such speculation. I figured the anonymous parent comment was faked-you know bring on the feeding frenzy again..sigh..

Autism Mom Rising said...

Wakefield, Wakfield, Wakfield. Meanwhile, can anyone explain why it is impossible to get my son,who clearly has severe bowel problems,any treatment whatsoever?I have been to two GI doctors, neither would examine him. I told the second one how my son had his first normal GI functioning in five years and she said, "hmmn, I wonder why that is?" but still never examined him. Huh? Bowel inflammation maybe, just like his neuro is treating his brain inflammatio?

Meanwhile as the steroids wean his GI agony comes back full force. People can say whatever they want about Wakefield and Thoughtful House, but if kids can't get help anywhere else what are parents supposed to do? They are going to take the kids to someone who will actually examine them.

Make no mistake about it: Autism and GI problems are a political issue. My kid can't get the same help an NT kid gets just for walking through the door. And hell yeah I'm pissed.

Thanks for letting me rant Kim. I have no idea how to help my son when doctor after doctor won't even look at him.

Autism Mom Rising said...

That sentence should have said he had his first normal GI function in five years on steroids, Prednisone.

kathleen said...

AMR-I have a question..and really I am just inquiring..are you saying that you are being refused treatment? I understand that there are doctors that..well..are not the best at listening (we had an issue with an ENT many years ago) But what about the doctor who diagnosed the severe GI issues? Who prescribed the steroids for it..I'm not understanding. I have three on the spectrum, and if anything..my pediatrician is much more thorough with them because of language issues. I have never been refused treatment because of autism. Have you reported this person-because that is discrimination. I'm not sure where you live-but I would contact the state medical board. Your son CANNOT be refused treatment for his diagnosed bowel problems. I'm sorry that this is happening to him.

KWombles said...

Suzanne,

As someone with fibromyalgia and GI issues (and sleep issues and migraines, etc), I can relate to going to my share of doctors who could have handled things better. What I've learned over the years, after being scoped from both ends, is that even when all the tests have been run, one can be left in the same boat, with little in the way of treatment. It really bites as an adult to realize that some physical conditions must be navigated through; it's even worse on little kids who are hurting. My GI problems extend back into childhood.

I can honestly say that while we've run into professionals who at times have acted less than professionally or diagnosed inaccurately, we've never faced a doctor dismissing, discounting, or refusing to treat our children because they have autism; their problems have never been blown off as part of their autism. I'm sorry you've had that experience and hope you'll find appropriate treatment for your son.

Wakefield, though, will be raised on this blog as long as he's held up and revered by people who ignore the facts regarding him.

You know, there was a study on weighted vests for kids on the spectrum. Turned out it made no difference in the kids' behaviors, but it did make their mothers feel better. Isn't that interesting? The moms felt they were taking a course of action to help their children and so felt better, felt less stressed, and consequently interpreted their children as doing better, even when objective measures showed no difference in the children. I wonder how many folks have gone to Thoughtful House and it's the parents who are the ones who feel better? After all EGDs and colonoscopies don't do anything for a patient to treat symptoms. But it feels like action, and they are fairly invasive, and afterwards, parents are given diets and supplements for their child and plan of action and a frakking large bill since none of it is covered by insurance. Don't you find that interesting that none of it's covered by insurance?

Autism Mom Rising said...

Kathleen, no I wasn't clear at all. That was late when I wrote that and very frustrated because my son is not going and it looks like hospitalization may be on the horizon, again.

The steroids were prescribed by a neurologist for temporal lobe seizures---similar to Landau Kleffner (rather than full blown seizure spikes overnight in temporal lobes like LKS it is abnormal electrical activity in those same areas. Produces similar symptoms of regression to LKS, so it is often referred to as Landau Kleffner Variant by Boston Children's Hospital).

Anyhow, when the neurologist put son on Steroids for the LKV he had his first normal GI function in five years. It was amazing. As we wean the steroids six months later the GI problems are back full force.

Prednisone also happens to be what Thoughtful House prescribes to the Autistic Children who investigation reveal have bowel inflammation. I know several of those children here in town and they got better on the steroids, finally started growing and gaining weight and going to the bathroom, just like my son.

Back to Kathleen's question. We have taken him to two GI doctors here. The first one was horrendous. Told us he is probably eating two much cheese, this after we told her he does not eat dairy. Would not even examine him. Second one, the same, no examination.

This is apalling and I have no idea what to do.

I have no idea if Wakefield's one study ultimately means anything. That's not what this is about for me. What I do know is that he cares about the subset of Autistic kids with bowel issues and most of the profession does not.He looked into it. He did not tell parent the kid is probably eating too much cheese. For that reason alone he has my respect.

As Facebook started connecting parents a few years ago I started asking around...parents of kids with GI issues, dozens and dozens of them, I asked them if they were able to get their kids examined, to get them help. This was people all over the world in England, South Africa, United States, Australia...it was always the same answer: the GI docs blew them off. I started to suspect that this is a political issue and that nobody wants to be the one to look inside these kids, nobody wants to be the next Wakefield.

To Kim's point. I also find it disturbing that TH does not take insurance, even for the cost of scopes. Someone has made bank off the suffering of Autisic kids because it was clear we had no other place to go. For anyone who is interested, there is one other doctor in this country who will treat Autistic kids for their GI issues, Dr. Buie in New England, and I believe he takes insurance.

So my points here aren't to stand firmly behind whatever Wakefield and colleagues found because it was one study. My point is to praise him for even bothering to look because I don't see anyone else lining up to help.

KWombles said...

Wakefield does not deserve praise for being willing to look, as if he were the only physician who has, at autistic children and comorbid gastrointestinal issues.

If you need someone to respect for that, then Tim Buie, who is not a disgraced, delicensed physician, is far more appropriate (yes, I know you mentioned him). Buie is board certified in both pediatrics (1996) and pediatric gastroenterology (1992).

http://massgeneral.photobooks.com/directory/profile.asp?dbase=main&setsize=50&last=buie&pict_id=1000480

Buie has been conducting above-board research into gastrointestinal issues and children since 1994 and in conjunction with autism since 2002; I've covered his research on Countering. He has no blemishes against him, no accusations, and hasn't taken hundreds of thousands of pounds from law firms hired to pursue legal cases on behalf of parents with autistic children.

Buie's conducting good, solid research. He's not had three papers retracted from journals.

Some of his publications are linked below:

http://pediatrics.aappublications.org/cgi/content/full/125/Supplement_1/S19

http://pediatrics.aappublications.org/cgi/reprint/125/Supplement_1/S1

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=search&db=pubmed&term=Buie%20T%5Bau%5D&dispmax=50

Buie is not the only one examining this issue, either. In the last 14 years, 184 reputable studies have been done (that come up on Academic Search Complete, Medline, and Health Source: Nursing/Academic Edition).

The problem is not that no one takes this seriously. The problem is in available treatments. The problem is in limited numbers of pediatric gastroenterologists.

And beyond that, the problems are in unrealistic expectations of what medicine and doctors should be able to do. And I get it, I really do. It's beyond horrible to watch your child suffer and not find ready answers and quick fixes, and so I get why many parents will turn to folks who promise those ready answers and quick fixes.


Long term corticosteroid use is dangerous; my mother, who had sarcoidosis, was treated for years with these medications and developed Addison's disease as a result. She will be on corticosteroids for the rest of her life. At best it's a temporary treatment and doesn't solve anything in terms of IBS or Crohn's, and the treatment carries with it tremendous risks.

The thought that people travel thousands of miles to pay out of pocket for a doctor to treat their children with dangerous medications that should be closely supervised and only given when lesser measures have failed to produce symptom relief should give anybody tremendous pause. It should give people more pause to realize that the clinic was being run by someone NOT licensed in the US to practice medicine and whose discipline was not pediatric gastroenterology and who had no training in autism. Seriously. That really ought to concern people. Buie doesn't appear to claim that autism is caused by measles in the gut, by "leaky gut syndrome" or as Wakefield has done, shifted the attention to thimerosal. Buie is soundly grounded in available empirical evidence. Yeah, if I had to travel to get my child care for gastrointestinal issues and my choice was Buie or Thoughtful House, it's a no brainer.

Autism Mom Rising said...

Could you please show me the portion of the study where the researchers say autism is caused by measles or leaky gut? From what I understand it said the children in the study had measles virus in the GI tract but that they had not demonstrated the bowel disease or the autism was caused by the presence of the measles virus.

Doesn't Dr. Buie also treat with steroids?

In my area there are four Pediatric GI docs and parents of Autistic kids can't get anywhere with them. This is not about some pediatric GI shortage. Why in the whole country is it only Dr Bieue? This does not make any sense.

Autism Mom Rising said...

Also, I think it is important not to assume just because a doctor is prescribing steroids that must automatically mean he prescribes them in long term, continuous fashion. Not one of the kids I know who were treated by TH are treated that way. The body is given periodic breaks, just like Alex's neuro does with him. Nobody likes steroids (except pro athletes) but they relieve agonizing pain in the suffering and maybe it is okay to do that now and then. My son had little quality of life before pred, was wasting away, not growing, couldn't function in public, we almost had to take him out of school. He is not a shadow of that person these days.

Back to Wakefield - I always found it interesting that out of 13 names on that paper only the three that refused to retract its findings were brought to Gmc. I wonder if the other 3had retracted if they would have been taken to trial for their licenses at all? Surely they had to have known if they had only retracted things could have worked out differently.

KWombles said...

Suzanne,

I'll offer tidbits as I have time, but I'm responding during class breaks. As I'm working on this, I can see that you've commented again, so I'll touch on that.

Athletes are on androgens, not corticosteroids. Completely different thing. Again, long term use of corticosteroids have serious risks, to include Addison's disease, which kills without treatment, and which seriously compromises health even with treatment. If it were my child and corticosteroids were indicated for long periods, I'd want my physician pretty darn close at hand to monitor the child's condition, and the dangers of not using the medication better far outweigh the risks of using it.

As to the hearing and retractions of all but three of the original case series authors, I'm really confused: your concern isn't whether they engaged in unethical conduct, whether they performed unnecessary invasive medical procedures?

As to Wakefield's 1998 study and press release causing a decrease in vaccination rates because of Wakefield's assertion during the press release that the MMR was implicated in the children's autism, here's one quote from the Lancet:

"The UK government's drive to persuade parents that the combined measles, mumps, and rubella (MMR) vaccine is safe gained new momentum last week after the airing of a television programme about Andrew Wakefield. In 1998, Wakefield argued that the MMR vaccine should be withdrawn. Wakefield and colleagues had found an association between autism and intestinal abnormalities in 12 children and a possible relation with MMR vaccination (Lancet 1998; 351: 637—41). Criticisms of the study and Wakefield's interpretation of the data have followed. But public fears have remained, and private clinics offering the single shots have been besieged with requests from anxious parents."

The Lancet, Volume 359, Issue 9306, Page 590, 16 February 2002 doi:10.1016/S0140-6736(02)07771-1 UK government tries to control MMR panic.


The Lancet is free registration and will let you look at its full articles. There is abundance of literature on Wakefield and his retracted 1998 study, most of which I've read. If Wakefield was associated with a study and I could get my hands on the study, whether it involved autism or not, I've read it. Now, I grant you, that's not all 116 or so that have his name on it, but every one the databases have or free full text was available for, I've read.

I have to go back to work now. :-)

KWombles said...

http://briandeer.com/mmr/royal-free-press-1998.pdf

In this press release, Wakefield is quoted as saying: “The study has identified a possible link between gut disorders in children and autism. In the majority of cases the onset of symptoms occurred soon after the MMR vaccination. We clearly need further research to examine this new syndrome and, to look into a possible relation to the MMR vaccine."

Wakefield's own words at the press release of link the MMR to autism.

Science Mom said...

Prednisone also happens to be what Thoughtful House prescribes to the Autistic Children who investigation reveal have bowel inflammation. I know several of those children here in town and they got better on the steroids, finally started growing and gaining weight and going to the bathroom, just like my son.

Thoughtful House's diagnoses of 'inflammation' are dubious because they have made a cottage industry of Wakefield's failed hypothesis. Arthur Krigsman is fully on board with it as one of their GI doctors. Insurance won't pay for it because they are not medically indicated, if they were, then a reputable GI specialist would sign off on it. And before you complain that you can't get a GI specialist to start poking and prodding like that, have you considered that maybe they do know a bit more than we do?

I'm sure it's frustrating for you but do any of know what TH's success rate for their 'treatments' are? Of course not because they won't conduct a proper study and instead rely on parent testimonials. Kim nailed it when she mentioned the perceptions of parents and how they can effect success of an intervention. It's the same here, parents feel like they are doing something, anything to help their children. That is why DAN! is successful.

As for the steroids, have you considered the effect they have upon appetite and thirst? Have you considered that your child's thrives better on them as a result of their side effects rather than suppression of inflammation? I'm in no position to state that your son does or doesn't have gastro-inflammatory issues, I just wish to steer you to another possibility that would confound.

Back to Kathleen's question. We have taken him to two GI doctors here. The first one was horrendous. Told us he is probably eating two much cheese, this after we told her he does not eat dairy. Would not even examine him. Second one, the same, no examination.

If that is truly the case, then you should report them to your state medical board and find another GI specialist. Have you worked at all with a registered dietician and keep a food diary? Believe me, Dr. Buie is not the only reputable GI doctor with autism experience out there. You could even call Mass General and ask them if they can make a recommendation to you.

Back to Wakefield - I always found it interesting that out of 13 names on that paper only the three that refused to retract its findings were brought to Gmc. I wonder if the other 3had retracted if they would have been taken to trial for their licenses at all? Surely they had to have known if they had only retracted things could have worked out differently.

But that isn't the way it went down. The 3 GMC defendants were Wakefield, Murch and Walker-Smith. Murch and Walker-Smith were with the original 10 who retracted the Lancet study interpretations. You can see the comparison of names here:
http://www.ncbi.nlm.nih.gov/pubmed/15016483