Myths and Legends of Autism: Part 4
September 24th, 2007
Therapeutic Myths and Misadventures
Note: This ‘blog entry may contain metaphor, simile, analogy and comparison. These literary devices are not intended to imply, suggest, or assert anything about autism or people who identify themselves (or are identified by others) as autistic.
Just as Shakespeare did not mean that Juliet was a type G2 star when he penned the words, “But soft! What light through yonder window breaks? It is the east and Juliet is the sun.” [Romeo and Juliet, Act 2, Scene 2], comparisons between autism and other unrelated conditions should not always be taken literally. For those people who insist on finding meanings not intended by the author, I refer you to Post-Modern Literature Criticism sites.
This has been the hardest part of this series to write – but not because of a lack of material. On the contrary, the struggle has been to decide which therapeutic myths and misadventures to write about. I’m in a target-rich environment and I’ve really had to discipline myself to keep this entry from running to War and Peace size.
The purpose of today’s entry is to show some of the thinking errors that lead people – both practitioners and parents – to subject autistic children to “therapies” that are – at best – unproven and may even be dangerous.
I do not intend for this to be an exhaustive discussion – or even list – of unsupported autism therapies. That would be beyond the scope of a ‘blog – perhaps beyond the scope of any single person. Therapeutic myths in autism are multiplying faster than rabbits and nobody – not even the most well-informed DAN! practitioner – can hope to know of them all.
The first myth that I will address today is – technically speaking – not a therapeutic myth at all. It is a myth about the diagnosis of autism. But this particular myth is so intertwined with the “alternative” therapies of autism that it is best discussed with them.
The Myth of Developmental Stasis:
This myth, unlike most pertaining to autism, is not loudly trumpeted by most of those who promote “alternative” autism therapies. It is generally an implied myth. It is whispered, if it is mentioned at all, except by a few who fail to fully understand its implications.
Autism is typically described as a condition of developmental delay. Among the medical specialists who diagnose and treat autism, this is not a disputed issue. Children whose development remains static (i.e. do not progress, even slowly) are not considered to be on the “autistic spectrum”.
However, as “alternative” therapies for autism have failed to bear fruit, one popular tactic has been to stall for time. And this stalling requires the Myth of Developmental Stasis.
For example, when chelation therapy was first suggested as a treatment for autism, it was asserted that it would work (was working!) in a matter of months. When this didn’t happen for the majority of autistic children, the time window was extended – gradually – until it is now two to three years.
Even though there is no plausible biological reason that chelation for mercury (or lead or…) would take so long to be effective (given that much higher body burdens are cleared in a much, much shorter time), the proponents of this therapy argue that they are seeing improvement in their children’s condition in that time.
Of course, the children are also growing older. A child who began chelation therapy at age three would be five or six at the end of the putative “effective treatment duration”. It would normally be considered pointless or even silly to compare the behavior and developmental stage of a six-year-old to their behavior and development at three, even if that child had a developmental delay.
Unless, of course, you argue that they wouldn’t have progressed at all without the therapy. Which would indicate that they had something other than autism – since autism is a condition of developmental delay, not developmental arrest.
Strange as it may seem, this is precisely the argument that is made – or, more often, implied – when “alternative” autism therapies are discussed; that the autistic children could not have pregressed without the “intervention”.
Despite mountains of data going back several decades that shows autistic children do develop without any “biomedical” or other therapies, the “alternative” autism therapy supporters insist (usually implicitly) that the children receiving these treatments would otherwise not have progressed at all.
If that were true – which it is not – then “untreated” autistic children would remain at the same developmental stage they were when they were diagnosed – which is obviously not the case. Autistic children – even the most severely affected – progress, develop and mature. Even without “biomedical intervention”.
You can see now why this myth is generally kept under wraps; because it wouldn’t survive the light of day! There are those few who argue that autistic children – or, at least, their autistic child – won’t develop at all without whatever “intervention” they are touting, but they are apparently unaware of the obvious implications of what they are saying.
While I can’t say for certain that it might not be true for their child, or even a small number of children, I can be certain when I say that any child who is suffering from a developmental arrest lasting more than a year does not have autism.
The Legend of Secretin
“Aw man! Not secretin again!”, I hear you groan. I’m sorry, but secretin holds a special place in the pantheon of “alternative” or “biomedical” treatments for autism. It is – as far as I know – the only “alternative” autism therapy that has been tested in the rigorous fashion that the drugs used in “mainstream” (evidence-based) medicine are routinely subjected.
And, I might add, it came up short.
Despite that, secretin remains a useful example of what might happen if more of these “therapies” were tested.
The Legend of Secretin started in 1998, when Victoria Beck’s son received secretin as a routine part of an upper endoscopy. Secretin stimulates secretion of pancreatic enzymes and is used to demonstrate that the pancreatic duct and common duct are unobstructed without the risk of putting a catheter or endoscope into those ducts.
After the endoscopy, Ms. Beck’s son experienced a rapid burst of development, the extent of which is described in Ms. Beck’s book, Confronting Autism, which, regrettably, is out of print at the moment. Before long (October 1998), she was a national television celebrity and the entire “autism community” was aflame with a desire to inject their children with secretin.
I have to emphasize that I am in sympathy with the parents who rushed into this “cure”. It was advertised as nothing less than a miracle, although I remain curious about Ms. Beck’s son’s present level of development and even the degree of improvement he experienced after his endoscopy.
At the same time, there were a number of “leading lights” in the “biomedical” movement who were warning that the “window” to treat autism was narrow and that treatment had to begin very young in order to “cure” the child. Also contributing to the sense of panic was the fact that the only company producing secretin (Ferring) had stopped making it.
Almost immediately, a number of small pilot studies were begun at various universities. The early results were not as encouraging as Ms. Beck’s results, but that did little to dampen the enthusiasm for secretin.
Interestingly, at the same time, two patent applications were made. The first, filed on May 19th, 1998 by Victoria Beck, Dr. Karoly Horvath and the Repligen Corporation, was for using secretin in the diagnosis and treatment of autism.
On January 13, 1999, as second patent application was filed by Victoria Beck, Dr. Bernie Rimland and the Repligen Corporation for using secretin – administered by any conceivable route – for the treatment of autism.
So, here we have some of the biggest advocates of secretin for the treatment of autism represented in applications to patent the use of secretin in the treatment of autism.
Interesting.
Well, the story continues. More research and better research was conducted. Repligen, the company that now owned the patents (having paid handsomely for them), was gearing up to make recombinant secretin and stood to profit handsomely if secretin was an effective treatment for autism. They chose to pursue FDA approval for secretin as a treatment for autism rather than simply allowing practitioners to use it “off label”. It was a costly choice, in more ways than one.
As the months turned into years, the bigger and better secretin studies were failing to show any benefit. However, at a DAN! conference in October of 2001, Walter Herlihy, PhD, CEO of Repligen, reported that the results of the Phase II study, while not showing statistically significant results, were very promising.
The bad news kept coming in, but the Repligen Corporation persevered with Phase III of their FDA approval process. Finally, on January 5, 2004, even Repligen had to admit that secretin was no better than placebo, even on a highly selected group of children that their Phase II study indicated would have the best response.
The fact that the company that stood to gain the most if secretin were an effective treatment for autism had finally admitted that it was no better than placebo was completely ignored by many. The best example is a letter from Bernie Rimland.
Over three years later, secretin is still used by a number of “alternative” practitioners in the treatment of autism. But then, so is homeopathy, another placebo.
What are the lessons to be learned from The Legend of Secretin?
[1] People can fool themselves – a large number of doctors and parents truly believed that secretin had produced significant improvement in autistic children. When the evaluators (doctors, therapists and parents) didn’t know who had gotten the drug and who had gotten placebo, they couldn’t tell the difference between the two groups.
[2] Smoke does not always equal fire – despite all the hype, secretin ended up being worthless as a treatment for autism. Hundreds of people claimed that it “worked” – it didn’t. Some still claim that it “works”.
The Myth of Medical Transubstantiation:
Several of the proponents of “alternative” autism therapy like to rant about the “evils” of pharmacotherapy. Dr. Bernie Rimland (of blessed memory) used to go on about the use of Ritalin and other “drugs” on autistic children. It seems that they see anything tainted with the breath of “Big Pharma” to be unacceptable for human use.
Unless, of course, it is prescribed and/or administered by one of their pet physicians.
Lupron, Actos (note “black box” warning), intravenous immunoglobulin (”black box” warning), Succimer, Endrate (”black box” warning)/Versenate (”black box” warning), and even Lamictal [for autism, not seizures](”black box” warning) and Depakote (”black box” warning) are all acceptable therapies if they are administered by one of the annointed.
In other words, a “drug” isn’t a “drug” if it’s used for something that it hasn’t been approved or studied for. And if it’s given by a “Brave Maverick Doctor”.
This seems a bit…well, hypocritical.
After all the time spent beating up on doctors who prescribe (and parents who administer) Ritalin and Risperdal to autistic children, shouldn’t they at least be a little embarassed about prescibing Lamictal (which has been shown to be no better than placebo - except in its ability to cause side-effects)?
Well, that’s all for now. I’m going to be taking a slightly different tack for the next several posts as I gear up to teach a new course in Evolution. I think that it’s time for some basic lessons in critical thinking and “how science works”.
Prometheus
Filed under: Autism Science, Autism Treatments, Critical Thinking
September 24th, 2007 at 10:14 pm
Our neurologist from Georgetown Medical prescribed Depakote as a treatment for autism, no seizures, post EEG or EKG or whatever the worthless overnight brain test was. Wait a minute, he is a respectable doctor. I should ask him if he wants to be recruited as a DAN doctor, shouldn’t I?
September 25th, 2007 at 9:45 am
Bernie is a guy who used to be a scientist. Later, for whatever reason, he begun to draw conclusions based on testimonials alone. That’s why he couldn’t accept the results of the double-blind studies testing Secretin. The testimonials told him it was 70% to 75% effective! The whole foundation of DAN! is made up of testimonials.
September 25th, 2007 at 11:43 am
Chuck,
Depakote has many uses besides seizures - it is also used as a mood stabilizer. If you’re not sure why your doctor prescribed it, perhaps you should ask.
On the other hand, there are a lot of practitioners - DAN! and non-DAN! - who are using valproic acid (Depakote) to treat some fundamental cause of autism (what that might be is still rather vague).
It is not necessarily the drug that is the problem - it is the rationale used to prescribe it.
As an aside, I would be far more comfortable having a neurologist - even one from Georgetown - prescribing Depakote than I would having the same drug prescribed by someone who has had no supervised experience (i.e. residency training) in its use.
Joseph,
Dr. Rimland’s travel to the “Dark Side” started long ago. If you have the time, read his contribution in Orthomolecular Psychiatry (published in 1973, just nine years after his book, Infantile Autism).
In his Orthomolecular Psychiatry chapter, Dr. Rimland discusses his vitamin B6 and magnesium therapy (which he perseverated on until his death) and makes some astounding assertions.
One of my favorites is when he tries to explain why the B6/Magnesium therapy was so much more effective on children living with their parents than it was on institutionalized children. His explanation is that the nurses in the institutions (who are required by nursing regulation to document accurately all medications administered) failed to give the vitamin B6 and magnesium because they didn’t believe it would help.
He, of course, overlooked the much more likely (more likely than all the nurses in all the institutions violating regulations because they didn’t like Bernie’s therapy) explanation that the parents, having much more at stake, were inclined to see improvement where there was none.
And thus began the DAN! movement.
Prometheus
September 25th, 2007 at 11:54 am
A “quack” is still a “quack” even if they have residency training. I have seen more quackery from those with residency training then without.
September 25th, 2007 at 1:07 pm
Chuck,
I’m having a hard time following your argument.
Are you saying that your neurologist is a quack or that he/she prescribed Depakote but isn’t a quack?
I can’t disagree that a quack is a quack no matter what their training level, but I’d have to say that a physician prescribing a dangerous medication that they have little or no training with is in the “danger zone” of malpractice and/or quackery.
The point of the section - which may have gotten lost - is that the same people who howl about the use of “drugs” and “dangerous, mind-killing drugs” in autistic children are the same who blandly approve of the use of different (or sometimes the same) drugs for “alternative” uses.
This is “off-label” use, in most cases. Now, “off-label” use of drugs is not a priori evidence of quackery or even “alternative” medical therapy - and that’s not my point.
It’s not about the drug, it’s about the reaction by the non-medical (or sometimes quasi-medical) members of the “alternative” autism therapy “community” to “drugs” used by “mainstream” (evidence-based) practitioners and the very different response when “drugs” - often more dangerous drugs - are prescribed by “alternative” practitioners.
Prometheus
September 25th, 2007 at 1:49 pm
So, what to do? for those of us who are extended family of an autistic person…when the parents claim “astounding improvement, thanks to XYZ Therapy,” when we–”outsiders”–see little if any improvement. And any improvement *could* be simply maturation, as XYZ Therapy must be used for extended amounts of time, in order to “work.” Are there more studies that disprove these dubious treatments?
September 25th, 2007 at 2:28 pm
He, of course, overlooked the much more likely (more likely than all the nurses in all the institutions violating regulations because they didn’t like Bernie’s therapy) explanation that the parents, having much more at stake, were inclined to see improvement where there was none.
Well, as I’ve noted in my blog recently, Kanner presented substantial evidence that the functioning of autistics insitutionalized for most of their lives gradually and markedly deteriorated. In fact, this is probably the single most significant environmental factor determining autistic outcome ever found — though never again studied AFAIK.
September 25th, 2007 at 4:58 pm
Hi Promotheus -
“Unless, of course, you argue that they wouldn’t have progressed at all without the therapy. Which would indicate that they had something other than autism – since autism is a condition of developmental delay, not developmental arrest.
Strange as it may seem, this is precisely the argument that is made – or, more often, implied – when “alternative” autism therapies are discussed; that the autistic children could not have pregressed without the “intervention”.”
What about those of us who saw our children’s behavior, cognition, and physical well being reverse, for months or years; only to reverse again in a positive directoin once biomedical treatments were started?
Perhaps what my son has isn’t autism, though he clearly meets DSM IV and has been given that label by multiple evaluators.
All I can tell you is what we saw. From looking us in the eye, to avoiding eye contact in all sitautions. From waving hello and goodbye and mimicing behavior to complete ignorance of other human beings. From a few dozen words to unbroken silence; no babbling, jammering or words.
For nine months we waited for vocalizations to return, for self injury to stop, for recognition that other people were talking to him to be evident, for his bowel movements to return to normal. Nothing, nothing, nothing. Speech and occupational therapy are given for six months, to no effect. No change in behavior.
We begin biomedical treatments and these symptoms begin to abate immediately. Why on earth would I conclude that this was a coincidence?
It is laughable.
Take care.
- pD
September 25th, 2007 at 6:38 pm
Dear Promotheus:
In August, Prof. Mulick, Ohio State, and his students did a presentation on “fad” autism treatments. The press release is at http://www.eurekalert.org/pub_releases/2007-08/osu-aad081507.php
I haven’t been able to locate copies of the presentations on line. Do you have a link?
Dear Ms. Halston:
I’d suggest you begin by examining the anti-quackery ring sites:
http://g.webring.com/hub?ring=antiquackerysite
But, always remember that you can’t rely on any one person’s opinion. There’s too much that isn’t known or understood. You have to cross-check information and assertions. Also, you need to check back to the original source of the information and assertions. And, always check the credentials and background of any “expert” (and remember that just because someone has a “Ph.D’ or other degree doesn’t mean it wasn’t obtained by mail order — so track down the college or university from which it came). Many, if not most, reputable physicians and researchers post their CVs on-line. (Hint: you should repeat searches using different search engines — google, yahoo, alta vista and meta crawler will likely give quite different results).
Another hint: Dr. Temple Grandin, Ph.D.’s books, articles and videos are almost uniformly excellent. Dr. Grandin is autistic. She describes what it’s like on the inside looking out — which it really helps to understand.
There are no easy answers or miracle cures. You dig, dig, dig, and remain skeptical — and you’ll also have successes.
September 25th, 2007 at 6:54 pm
The danger is no different to the child reguardless if an “mainstream” practitioner or “alternative” practitioner when using “off-label” treatments. Yes we did drop the “mainstream” quack from Georgetown Medical for his “alternative” treatments.
September 25th, 2007 at 11:03 pm
Prof. Mulick and his students failed to discuss the worst “fad” autism treatment that has absolutely no proven record of improvement of autistic individuals and multiple times the number of deaths of chelation.
Institutionalization
You would think with a proven track record like that they would stop touting their expertise, but they have not. Since psychology professionals with medical degrees and residency training are routinely in charge of these treatments, I’m sure it was just a mistaken oversight of the students who failed to mention it.
September 26th, 2007 at 12:29 pm
Chuck,
I am in agreement that institutionalisation has been shown to worsen autism - or at least its outward manifestations.
However, I wasn’t aware that institutionalisation was being recommended as a treatment for autism. As I understand it, institutionalisation is [a] becoming less common and [b] is not a treatment for autism but a means of containing the behaviors.
I do not advocate institutionalisation for autism or for any condition or disorder. I also do not universally condemn it. There are probably people (with and without autism) who need to be in an institution for a variety of reasons. I have no experience in this matter.
Do you, Chuck, have personal experience with the committal of a family member to an institution, or are you simply venting your opinion?
Prometheus
September 26th, 2007 at 1:06 pm
A local institution near where I live killed an autistic individual hours after he was admitted a few weeks before Christmas. A close on-line friend’s son was also killed in a similar situation. I have correctly and intentionally picked the words I have used.
http://dictionary.reference.com/browse/treatment
Institutionalization is OFTEN recommended as “treatment” by psychological professionals. This treatment was promptly recommended to us and promptly denied by us from a licensed member of the pseudoscience of psychology. He is yet another “quack” in the “mainstream”.
September 27th, 2007 at 7:50 pm
I have to agree with Chuck that mainstream professionals are often clueless. If it weren’t for the fact that I went and studied Kanner’s original papers, I wouldn’t have realized how dismal autistic outcome is in institutions. (Not only that, it looks like outcome of autistics is almost certainly non-dismal if intitutionalization is simply postponed to adulthood, though data is scant on this.) I would’ve expected most outcome studies to look into this matter and issue strong warnings, but they unfortunately don’t. That’s not to say that maverick doctors are better. No way. No one is perfect I guess.
October 21st, 2007 at 3:13 am
hmmm. I’m not sure what you’re trying to say about ritalin. Ritalin works. Good. OR Ritalin doesn’t work. Bad.
Dan!ites are quacks. No doubt. Diets (GFCF, specific carbohydrate, Finegold), chelation, vitamins shots, suppositories, charcoal supplement, Lupron, growth hormones… all quackery. BUT, ritalin works, and works for everybody btw. May not be worth the risk for everybody…. but it does have an effect.
October 21st, 2007 at 1:44 pm
Anon,
What I was trying to say about Ritalin is that, despite being villainized by the “biomedical” proponents, it has been shown to be helpful in about half of autistic children.
Many of the “biomedical” treatments promoted by the same people who find Ritalin distasteful have actually been shown to NOT be effective.
Not to hammer the issue, but the point I was trying to make is that the “biomedical” advocates are incapable of telling fact from fiction. They are , for the most part, simply parroting what they have heard (and don’t understand).
Prometheus
October 21st, 2007 at 6:14 pm
Institutionalization is a “treatment” for the caregiver. And that is not said in way that is judgemental. Some people are simply not in a position to cope with their children or charges. That’s more likely if the child is severely autistic. Sometimes it becomes a matter of 0 quality of life for the caregiver, a situation that we should all take care not to judge too harshly.
October 21st, 2007 at 6:19 pm
PS. Does anybody have any references to fatalities due to chelation in autistic people? I know of the 5 year old in Pennsylvania. Any others? FEAT of Washington wants to know.
November 10th, 2007 at 3:36 pm
The various alternative treatments put foward by interested parties and doctors are often nothing more than the most sincere attempts by people and professionals desperate to at least TRY something. They find, of course, that if what they try doesn’t kill or harm it can at least get that out of the way as a possible help — in the event it doesn’t work. Of course, there are times where the method tried lead to a partially financial incentive for the care provider to continue — just as all medical clinics require billing staff to assure they are somehow paid by some source of payment and that their practices stay economically profitable. I never tried chelation for my autistic child — it seemed to far-fetched. However, through plenty of reading, I learned about secretin and scraped around looking for whatever professional in our area was willing to give it a try and whatever pharmacist stocked it. After giving it a try for a few months, it seemed to produce no measureable effect. I am probably much more objective than the average parent with an autisitic child. I recognized long ago that there could be a part in me that would WANT the therapy to work, so I carefully observed whether there was anything that might be measureably the result of secretin — there was not.
I am most grateful to the pharmacist and the medical specialist who were willing to give it a try. It got that out of our system and we could move beyond the hope — for now — that there might some silver bullet pharmaceutical. If that ever comes along, it will be a tremendous hit for the company that develops it. So far, it would seem there’s nothing in the pipeline other than gene therapy as a remote future possiblity.
Doctors who are willing to try things are not usually engaged in “quackery.” They are concerned and sympathetic. Do you know that most of the psychoactive medications have not yet been properly clinically tested by their manufacturers for use in children? My family would have disintegrated under the unceasing wall-climbing and running of our autistic child were it not for Risperdal, which — in the 1990’s — was not yet fully clinically documented for use in childen. Since then, we have found better ones. Abilify together with Chlonidine are our current medications for him. The combination seems to work better than the Risperdal did. We are still grateful for the several years during which Risperdal made his life — and ours — more tolerable. It turned out the “alternative” of secretin did not help with symptoms of autism in our son. We are, however, quite grateful to the professionals who helped us give it a try, so we could rule that out as a possibility.
November 14th, 2007 at 6:32 pm
My son has been on both Risperdal and Depakote. These were prescribed because of specific behaviors that he had which were self-injuring and also injuring to others. The Risperdal worked for a while as we saw the end of head banging and hitting but eventually the medication stopped working and we started using Depakote. This has been effective and we have seen no side effects. The medications were recommended by Dr. George Capone at KKI (part of Johns Hopkins) and our son is being followed up by a psychiatrist. The medications seem to be effective but the doctors are the first to admit that not enough studies have been done with these medications and they certainly are not effective on all children with autism with these behavioral issues. These medications did not cure my son’s autism. They did not lessen most of the traits of autism. They were effective in helping to reduce one specific behavior that was interfering with his ability to learn.
November 27th, 2007 at 9:34 pm
hmmm… reading on the re: Ritalin.
My son showed extremely marked improvement after taking Ritalin (well, chewable Methylin, but I was told it’s pretty much the same stuff as Ritalin). My fil, who demonized medicine for his adhd kids, was convinced (and it had to take a lot to convince him).
In the coming weeks our son reverted and we noticed no change beyond that first week. It took me a while to accept, I’d been convinced from before he was diagnosed with autism that he was ADHD, like his father, and even though he is also autistic, I figured, if we could treat the ADHD, we might be able to help his development.
We eventually decided most likely he just had a really good week in coincidence with the Ritalin. He had a really good week, recently, on no medication as well. My initial belief that ritalin helped him is an example of placebo effect.
I still believe our son is probably ADHD in addition to being autistic (and have a adhd expert pediatrician who agrees), so you’d think it’d help, but we decided we didn’t want to try increasing the amount of medication, or trying different medications, to see if it’d help, as he’s probably better off health wise off medication (husband had some stomach/liver problems as an adult that could or could not be attributed to his ADHD medications as a child - not Ritalin, but others - he’s actually been through a cocktail himself, which helped me to decide not to put my son through a cocktail). Adderall (we tried it because it was easier to get than the chewable methylin), on the other hand, seemed to consistently drive our son bonkers (off Adderall he only acts like that when he’s extremely overtired, instead of every evening, and then we put him straight to bed)…
January 14th, 2008 at 10:31 am
The real “evidence of harm”…
I haven’t written before about the tragic case of Katie McCarron, the three year old autistic girl whose mother killed her in May 2006. It’s an incredibly sad tale, and others have covered it better. However, the trial started last……
October 20th, 2008 at 2:17 pm
[...] stasis and that any development observed must be due to whatever intervention the parent is making. It is not; autism is a condition of developmental delay. Autistic children can and do develop, sometimes [...]