Listening to Autism
Periodically (every other day, if not more frequently), some outraged parent will send me a blistering e-mail about how I am "not listening to the parents" or "not listening to the autistic children" or (even more curiously) "not listening to autism".
I assume that these people are not being strictly literal in their complaints, as I listen to anyone who cares to speak to me (and read what people send me).
I suspect that their core complaint is that I listen but don't agree.
Here is the gist of the matter:
Parents have a great deal of observational data about their children - what they do, how they respond etc. - and many of them feel that this translates into understanding their children's emotions and thought processes.
How many of these parents will have cause to question this "understanding" when their children reach puberty?
But, to the matter at hand.
Many parents of autistic children also feel that their wealth of observational data gives them a special insight into their child’s physiology, as well. They feel – and many feel this way because they have been told by well-meaning “experts” – that they know more about autism than the people who study it, simply by the virtue of having “lived with it”.
These parents often lose patience with doctors and scientists who are hesitant to accept at face value the parent’s claims of dramatic improvement with “alternative” treatments or their explanation of what caused their child’s autism. The parents see the doctors’ cautious skepticism as a direct challenge to the parents’ innate knowledge.
Why is it that I don’t “trust” the parents’ stories of how (fill in the blank) improved their child’s autism? Well, at least a part of the reason is the track record of autism “cures”.
As an example, let's review the history of a "breakthrough" treatment for autism: secretin.
Secretin first hit the public scene in 1998, when it was reported that a single secretin injection (done as a routine part of endoscopy) dramatically improved the language and social functions of an autistic child. These initial reports led to a massive run on secretin and a number of studies - good, bad, short-term and long-term - were rapidly started.
The excitement for secretin kept building, even after some initial studies failed to find the dramatic results. In fact, the interest in secretin continues even after a large number of studies, including a focused, multi-center, multi-million dollar study sponsored by a drug company that had the patent for recombinant secretin, have failed to find secretin any better than placebo.
Should I be listening to the parents that believe that secretin improved their child’s autism? Even though well-designed studies sponsored by a company that had every financial reason to want to find an effect failed to find any effect? Would that be wise?
Enlarging the view a bit, a brief survey of parent-focused autism websites and newsletters reveals a dizzying number of “cures” for autism. Special diets, vitamins, minerals, and a growing (and worrying) number of prescription drugs (off-label uses) are being used to good effect, if parental reports are to be taken at face value.
So, if all of these treatments are effective, as the parents claim, then what are we to make of it all? As I see it, there are two overall possibilities:
[1] Autism can be improved by an amazingly broad range of “biomedical” therapies (as distinguished from behavioral therapies).
or
[2] Autism shows a pattern of alternating developmental stasis and progression, which fools parents into believing that the last “treatment” they tried before the improvement was the “cure”.
Interestingly, normal child development shows a pattern of alternating developmental stasis and progression. Most parents are vaguely aware of this, but the parents of children with developmental disabilities are hyper-aware of the developmental progress of their children.
Thus, if a “treatment” is proposed (or promoted) for autism and a large group of parents try it on their autistic children, the possible outcomes, even if the treatment is completely ineffective, are:
[a] If given at the end of a period of progression, the “treatment” will be assessed as having made the child worse.
[b] If given at the end of a period of stasis, the “treatment” will be assessed as having made the child better.
[c] If given in the middle of a period of stasis or a period of progression, the “treatment” will be assessed as being ineffective.
Remember, these are the possible outcomes even if the treatment is utterly without effect (either good or bad).
Hopefully, you are getting an idea of why I don’t put a lot of stock in parental reports of “treatments” for autism.
Let me try to explain the parental fervor for some of these “treatments” with a small fable.
In autism therapy, much the same system is at work, although I don’t claim that anyone is doing it deliberately, unlike the stockbroker in the story. Parents who get results will convince themselves that the “treatment” is working. They may have seen improvements in the past, but without a “treatment” to hang them on, these improvements would have seemed maddeningly random (as, in fact, they are).
The parents who don’t see any improvement will quietly drift away from the “treatment”. If they choose to tell other parents that the “treatment” didn’t work for their child, that is easily explained away by “every child is different – you need to find what works for your child”. And so, they head off into the sunset on a search for the “treatment” that will work on their child.
When you take in a broader view of the autism “treatment” landscape, it seems painfully clear that this is happening. Every therapy has its own group of parents who swear that it has “cured” or “recovered” their children. And each therapy also has a rather pitiful group of people who haven’t seen the “cure” yet, but are hoping that it will happen soon.
And there are dozens (if not hundreds or thousands) of “treatments” out there that are just like secretin – a few anecdotal stories (or even just one), a hint of biological plausibility (which, given that nobody knows what autism is, can be pretty vague) and a cluster of “me too!” stories.
In fact, even though secretin has been very thoroughly shown to be ineffective, there are still large numbers of “alternative” practitioners using it to “treat” autism. Apparently, no amount of good science is going to penetrate the core believers.
Unfortunately, most of the other “treatments” for autism are not going to get as thorough scientific evaluation as secretin did. Many of them have so little “biological plausibility” that no real scientist is going to want to bother submitting a proposal to study them. The rest have so little biological plausibility that they don’t even seem worth debunking for the fun of it.
And, given what happened with secretin, why would anyone bother? If people are going to “listen to autism” and ignore the science, what’s the point?
Prometheus
I assume that these people are not being strictly literal in their complaints, as I listen to anyone who cares to speak to me (and read what people send me).
I suspect that their core complaint is that I listen but don't agree.
Here is the gist of the matter:
Parents have a great deal of observational data about their children - what they do, how they respond etc. - and many of them feel that this translates into understanding their children's emotions and thought processes.
How many of these parents will have cause to question this "understanding" when their children reach puberty?
But, to the matter at hand.
Many parents of autistic children also feel that their wealth of observational data gives them a special insight into their child’s physiology, as well. They feel – and many feel this way because they have been told by well-meaning “experts” – that they know more about autism than the people who study it, simply by the virtue of having “lived with it”.
These parents often lose patience with doctors and scientists who are hesitant to accept at face value the parent’s claims of dramatic improvement with “alternative” treatments or their explanation of what caused their child’s autism. The parents see the doctors’ cautious skepticism as a direct challenge to the parents’ innate knowledge.
Why is it that I don’t “trust” the parents’ stories of how (fill in the blank) improved their child’s autism? Well, at least a part of the reason is the track record of autism “cures”.
As an example, let's review the history of a "breakthrough" treatment for autism: secretin.
Secretin first hit the public scene in 1998, when it was reported that a single secretin injection (done as a routine part of endoscopy) dramatically improved the language and social functions of an autistic child. These initial reports led to a massive run on secretin and a number of studies - good, bad, short-term and long-term - were rapidly started.
The excitement for secretin kept building, even after some initial studies failed to find the dramatic results. In fact, the interest in secretin continues even after a large number of studies, including a focused, multi-center, multi-million dollar study sponsored by a drug company that had the patent for recombinant secretin, have failed to find secretin any better than placebo.
Should I be listening to the parents that believe that secretin improved their child’s autism? Even though well-designed studies sponsored by a company that had every financial reason to want to find an effect failed to find any effect? Would that be wise?
Enlarging the view a bit, a brief survey of parent-focused autism websites and newsletters reveals a dizzying number of “cures” for autism. Special diets, vitamins, minerals, and a growing (and worrying) number of prescription drugs (off-label uses) are being used to good effect, if parental reports are to be taken at face value.
So, if all of these treatments are effective, as the parents claim, then what are we to make of it all? As I see it, there are two overall possibilities:
[1] Autism can be improved by an amazingly broad range of “biomedical” therapies (as distinguished from behavioral therapies).
or
[2] Autism shows a pattern of alternating developmental stasis and progression, which fools parents into believing that the last “treatment” they tried before the improvement was the “cure”.
Interestingly, normal child development shows a pattern of alternating developmental stasis and progression. Most parents are vaguely aware of this, but the parents of children with developmental disabilities are hyper-aware of the developmental progress of their children.
Thus, if a “treatment” is proposed (or promoted) for autism and a large group of parents try it on their autistic children, the possible outcomes, even if the treatment is completely ineffective, are:
[a] If given at the end of a period of progression, the “treatment” will be assessed as having made the child worse.
[b] If given at the end of a period of stasis, the “treatment” will be assessed as having made the child better.
[c] If given in the middle of a period of stasis or a period of progression, the “treatment” will be assessed as being ineffective.
Remember, these are the possible outcomes even if the treatment is utterly without effect (either good or bad).
Hopefully, you are getting an idea of why I don’t put a lot of stock in parental reports of “treatments” for autism.
Let me try to explain the parental fervor for some of these “treatments” with a small fable.
The Tale of the Lucky Stockbroker
Long, long ago, a smart fellow decided that he would try to make a lot of money in the stock market. Having watched the market for some time, he realized that the best way to make money on stocks wasn’t to buy and sell them, but to sell expert advice.
Knowing that most people who invested in stocks were wary of advice, he set out to prove to people that he had a special power for knowing when stocks were about to go up or down. He got a list of a ten thousand people who were avid stock traders and sent each of them an e-mail describing his services (and fees) and giving them a “sample” stock pick.
Half of the prospective customers got an e-mail saying that the stock would go up in the next week, and half of them got an e-mail saying that the stock would go down. At the end of the week, the stock he picked had gone down, so he sent another e-mail to the five thousand people who had received the “correct” stock advice.
Half of the five thousand got an e-mail saying that another stock would go up in the next week; half got an e-mail saying it would go down. At the end of the week, he sent out another e-mail to the remaining 2500 would-be customers.
At the end of six weeks, he was down to a little over 150 potential customers, but those 150 has seen him make six correct stock predictions in a row! The last e-mail he sent them was to tell them that they could continue to get these predictions only if they bought a five-year subscription to his service.
In autism therapy, much the same system is at work, although I don’t claim that anyone is doing it deliberately, unlike the stockbroker in the story. Parents who get results will convince themselves that the “treatment” is working. They may have seen improvements in the past, but without a “treatment” to hang them on, these improvements would have seemed maddeningly random (as, in fact, they are).
The parents who don’t see any improvement will quietly drift away from the “treatment”. If they choose to tell other parents that the “treatment” didn’t work for their child, that is easily explained away by “every child is different – you need to find what works for your child”. And so, they head off into the sunset on a search for the “treatment” that will work on their child.
When you take in a broader view of the autism “treatment” landscape, it seems painfully clear that this is happening. Every therapy has its own group of parents who swear that it has “cured” or “recovered” their children. And each therapy also has a rather pitiful group of people who haven’t seen the “cure” yet, but are hoping that it will happen soon.
And there are dozens (if not hundreds or thousands) of “treatments” out there that are just like secretin – a few anecdotal stories (or even just one), a hint of biological plausibility (which, given that nobody knows what autism is, can be pretty vague) and a cluster of “me too!” stories.
In fact, even though secretin has been very thoroughly shown to be ineffective, there are still large numbers of “alternative” practitioners using it to “treat” autism. Apparently, no amount of good science is going to penetrate the core believers.
Unfortunately, most of the other “treatments” for autism are not going to get as thorough scientific evaluation as secretin did. Many of them have so little “biological plausibility” that no real scientist is going to want to bother submitting a proposal to study them. The rest have so little biological plausibility that they don’t even seem worth debunking for the fun of it.
And, given what happened with secretin, why would anyone bother? If people are going to “listen to autism” and ignore the science, what’s the point?
Prometheus
posted by Prometheus at 1:17 PM
14 Comments:
I very much appreciate your sensible & logical approach to autism thought & discussion. I think your previous post on "Fear Pressure" explained very well the reasons people are so rabid about the "cure" & this post continues in this vein. I think that "parent's as experts" is definitely a part of the problem, although another part is that some of the experts that parents depend on are not as skilled in diagnosing & assisting parents as we'd ultimately like them to be. Our first pediatrician did not identify our son's severe developmental delays, even though we'd had questions from the start. We were fortunate to find a pediatric neurologist who gave us a diagnosis without the baggage of a prognosis, & found another pediatrician who is knowledgeable & does not seem to have a particular ideology when it comes to autism. It may help that both my husband & myself have science training, so we are aware of when we need to get out of our son's care-providers' way (& when we need to intervene, too).
I agree that far too many parents assume what their children are thinking & feeling without consideration for their individuality. Our son has usually been able to tell us what he's thinking, so we are less likely to make such assumptions (& he sets us straight when we do :). What also concerns me is that many parents feel they have the right to subject their children to unproven, sometimes dangerous "treatments" because they have confused ideology with facts, & believe that trying to force their children to be other than they are is more important than valuing them as human beings. Hatred is hatred, no matter how lovingly it may be disguised...
Bingo!
You hit it right on the head - this is exactly the line of thought that steered me clear of biomed treatments for my son. Nice work, Prometheus.
Lisa/Jedi,
To be sure, not all doctors are created (or trained or kept up to date with CME) equal. As a parent (as a patient!) you have to be an advocate - if your concerns are not being addressed, get a second opinion (as you did - Hooray!).
Too often, however, parents of autistic children go beyond advocacy and into diagnosis and treatment. The lawyers have a saying: "A person who represents themself in court has an idiot for a lawyer and a fool for a client." Something similar can be said for people who want to diagnose and treat themselves or family members.
I think that it is passing strange that people who claim to not trust "mainstream medicine", "the government" and "Big Pharma" are willing to place absolute trust in practitioners and "experts" who provide no data and insist that we take what they say on faith.
Prometheus
In fact, even though secretin has been very thoroughly shown to be ineffective, there are still large numbers of “alternative” practitioners using it to “treat” autism.
That's 'cuz those silly drug company sponsored trials used the wrong secretin. The recombinant stuff is no good.
Everyone knows you have to use freeze dried Vietnamese pot-belly porcine duodena from pigs sacrificed and dessicated in strict accordance with Kosher law.
That's the good stuff and that's why it costs so much. Don't you follow the FDVPPDPSDK Yahoo group? Sheesh.
There's also this very typical entity: the "guru" biomed parent who dispenses treatment advice to everyone who contacts them in listserves, websites or in person. Because they have either extensive knowledge of DAN protocol, doctors or GF/CF diet; or a child that was supposed to be "recovered", the other parents constantly look for their advice. I knew there was something very wrong right from the start, when they were saying that bananas, oranges and apples are bad because of the "phenols", and that banana might be responsible for a child's "maniacal laughter". And there was this mom that scared me to death saying that the fact that my son never got sick might be a bad sign, maybe worse than a immune deficiency - an overactive immune system that might eventually shut down. She said I should not get my son tested by a regular pediatrician or lab. I should go only to DAN doctors. Well, I asked my son's pediatrician to run all those typical DAN tests (Ig levels, food allergies and intolerance, candida) and everything came back absolutely normal. I bet if had gone to a DAN doctor they'd get very different - and scary - results from their lab tests.
Prometheus,
I wish someone would publish this in a magazine like TIME or Newsweek. It is painfully obvious that a million different treatments can't all cure autism. Though it looks like some parents hedge their bets by doing about 30 different "plausible" treatments simultaneously.
Not to worry, if the 30 don't work, someone will point out that vitamin X cancels out prescription drug Y, and that everyone knows you have to "heal the gut first or chelation won't work!" or is it, "chelate first or healing the gut won't work"? Starve a cold or feed a fever? Sleep with head pointing North, or away from a doorway?
The stockbroker fable is funny, but apropos.
I do think some of the mercury quacks remind me of those touts on Saturday mornings that say they have the winning picks for the weekend's football games. Like the touts, the quacks know that by chance some of their treatments are going to appear to work some of the time.
That's why I figure that at some point in my life I'll go ahead and sell magic pixie dust as a cure for autism. Because I'm sure that a small percentage of my patients will improve after receiving the pixie dust, and those customers will be eternally (KA-CHING) grateful.
I want to emphasize that I don't think that the "alternative" autism providers are doing this in a deliberate fashion. I think that most, if not all, of them are completely oblivious to the implications of having dozens of "effective" autism "treatments" that have nothing in common (e.g. chelation, gluten-casein-free diet, secretin, vitamin A, vitamin B-12, DMG, etc.). I imagine that they've never stopped and questioned what they've been told (and what they're saying).
After all, if just about anything people have tried (except, oddly enough, most "drugs") has "cured" some group of autistic children, what does that say about autism? Clearly, one thing it would say (if it were true, which I'm not convinced of) is that autism is many disparate disorders with no common cause and, therefore, no common treatment.
Another apsect of this - and one that I will 'blog about later - is that having such a broad range of "effective" treatments also suggests that none of them are effective.
More on that later.
Prometheus
"Another apsect of this - and one that I will 'blog about later - is that having such a broad range of "effective" treatments also suggests that none of them are effective."
This I have to see... and the ensuing Mercury Militia backlash :P
I want to emphasize that I don't think that the "alternative" autism providers are doing this in a deliberate fashion.
That's ok. I'll do it instead.
Anonimouse,
Call me Pollyanna if you like, but I still hold that most (but probably not all) of the people who are providing "alternative" autism therapies are sincere people who are trying to do the best thing for their patients.
This does not keep them from being wrong.
It also doesn't keep them from charging "what the traffic will bear".
(http://sinclair.thefreelibrary.com/Jungle)
Just because some of these people aren't altruistic doesn't make them crooks.
It's also not a moral failing to be wrong. It's no great honor, either.
Given that there are a number of "mainstream" medical practitioners who are guilty of fraud (e.g. insurance fraud), it only holds to reason that a similar or higher percentage of "alternative" practitioners are also perpetrating fraud.
I suggest that a higher percentage of "alternative" practitioners may be committing fraud only because there is less supervision of their practice, since it usually isn't covered by insurance, government health programs or other third parties who work hard to keep shady practices in check in "mainstream" medicine.
I could be wrong, of course, but it seems a reasonable assumption.
But, back to the question at hand. I have had an opportunity to speak to some of the people who provide "alternative" autism treatments and they seem to be genuine and sincere in their belief that they are helping their patients. I also happen to think that most - if not all - of them have willingly suspended disbelief, which is not a good thing.
Their heart's in the right place, but their brain isn't.
Prometheus
While I don't discount the idea that there's a healthy amount of cognitive dissonance at work (along with helpings of the Concorde effect) the biggest problem is that people are confronted with pretty conclusive evidence that their hypotheses are untenable. At some point, you have to wonder whether these folks truly are deluded or are intentionally lying (or perhaps intentionally ignoring evidence of their protocol's shortcomings). There is a far stronger incentive to lie when your entire professional (and personal) identity is wrapped around a certain theory.
I tend to agree that there is a point at which denial crosses the line into actively ignoring the conflicting information.
Clearly, many of the practitioners of "alternative" autism therapies have the education and (presumably) the intellect to see how bankrupt their position is, yet continue to "press on". I suspect that there are many pressures at work, some of which I enumerated in "Fear Pressure". This leads to a number of "excuses" to ignore the data. The ones I see at work in the "alternative" practitioners are:
[1] It's working (or, at least, the parents are happy with the results), so I won't look too closely at the data. [The "Don't rock the boat" excuse]
[2] It would be way too humiliating (and potentially dangerous) to admit that I was wrong. Given the way the chelationistas attack apostates, I would call this the "Nobody leaves the Mob until the Mob says they can leave" excuse.
[3] Giving up the "alternative" approaches that have failed to show effectiveness would mean giving up the limelight. Many of the "alternative" autism practitioners have had fairly undistinguished careers prior to entering the autism field and the praise, admiration and publicity would be very hard to leave.
There are probably many others, but that is all that came to mind sitting here. Look for more about this topic right here!
Prometheus
Actually, there is a very good reason why all these different treatments "work", it is called the placebo effect, which happens to be mediated by nitric oxide.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15874901&query_hl=4&itool=pubmed_docsum
It is my hypothesis that placebos are particularly effective against conditions which are characterized and exacerbated by low nitric oxide. (which I think include ASDs, the theory of which I am writing up)
Of course believing in the placebo effect makes it work better. But once you start to doubt, the brain doesn't make as much NO, and the placebo effect goes away. It certainly goes away when you get worked up about something.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12601303&query_hl=6&itool=pubmed_docsum
(I think that is what a "melt-down" is).
I think that is why the curebies get so angry because by showing them how there is no scientific basis for the "treatments" they are using, we destroy the effectiveness via the placebo effect.
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