"Alternative Treatments for Autism"
Many, if not the majority, of families with a child suffering from autism
pursue dietary and nutritional approaches as components of treatment.
Estimates of the use of alternative therapies range from 28 to 95%,
with special diets or dietary supplements the most frequently cited approach.
Why so common?
Perhaps parents are acting on suspicion or distrust of standard medical practices,
or a desire not to have their children "drugged,"
considering alternative approaches more safe, natural, holistic,
but it also could simply be because the drugs don't work.
Pharmacological interventions in autism are mainly aimed
at reducing associated symptoms: calm them down, help them sleep,
but have no effect on the core symptoms of ASD—autism spectrum disorders,
like the social withdrawal, abnormal behaviors.
Only two drugs have been approved for the treatment of autism,
and both just target an associated symptom, irritability,
rather than the core deficits of the disorder.
Both drugs also have significant side effects
including weight gain and sedation.
It's no surprise then that parents seek alternative therapies.
OK, but do the alternatives work any better?
In the alternative medicine literature, you'll see a lot
of this kind of attitude: evidence schmevidence,
as long as the treatment isn't harmful, why not give it a try?
Or even going further to suggest trying a treatment
even if the evidence is stacked against it,
because hey, maybe your kid's the exception.
I'm sympathetic to that thinking.
Unfortunately, there are many unscrupulous charlatans out there
eager to take advantage of parents
desperate to try anything that sounds like it might help.
These researchers report receiving several emails a week
from practitioners offering "the cure" for autism
(often for the "low, low price" of $299)
reporting, to their horror, at how these emails use guilt and guile
to manipulate families:
"If you really loved your child, wouldn't you want to leave no stone unturned?"
When challenged, many such practitioners of these supposed cures
will say things like, "I know it works," "I've seen it work,"
or "I don't want to spend time and money testing it
when I could be helping children right away!"
The researchers urge parents to run, not walk, away
from any treatment that claims to be too good for science.
All treatments should be subjected to the rigor
of well-designed, double-blind, placebo-controlled clinical trials.
Our children deserve no less.
Parents try them anyway, often without even telling their physicians,
noting a perceived unwillingness among doctors to even consider
potential benefits of alternatives,
which I think arises because we've been burned so many times before.
High-profile examples of ineffective or even dangerous complementary
and alternative therapies have led to a general mistrust of and distaste for
anything believed to be outside the box.
Take the secretin story.
Improved social and language skills, improved core autism symptoms
after secretin administration.
Secretin is a gut hormone involved in digestion.
It's used in a diagnostic test for pancreatic function.
And so they were just doing this test on some children
who just happened to have autism,
and to their surprise within weeks of administering the test
there was a dramatic improvement in the children's behavior:
improved eye contact, alertness, and language.
Understandably, this sparked a media frenzy;
parents scrambled to find the stuff, leading to a black market for the drug.
What makes an interesting television program may not, of course,
be the same as what makes for good science.
You've got to put it to the test.
A randomized, controlled trial on the effect of secretin on children with autism,
and no significant effects were found,
though the study used porcine secretin, pig hormones.
Maybe human secretin would work better?
And the answer is no, apparently not.
Lack of benefit from human secretin, too.
But, no. Look at the data.
Secretin totally worked.
One shot of secretin and autism behaviors dropped within days!
But the same thing happened
injecting nothing, injecting saline, injecting water.
That's why we do placebo-controlled studies.
The widespread circulation of those anecdotal reports
of the miraculous benefits of secretin may have raised expectations so much
that it biased parents into perceiving improvement,
explaining the effects of the placebo injection.
In this way, ineffective treatments can become widely accepted,
even if there's no evidence to back them up,
exemplified by the fact that most parents in the study still remained interested
in secretin even after being told that it didn't work.
They just couldn't give up hope.
So the autism community continued to press: I mean, it's just got to work.
In the end, 16 randomized, placebo- controlled trials were performed
involving more than 900 children, and no evidence of benefit was found.
None of the studies revealed significantly greater improvements
in measures of language, cognition, or autistic symptoms
when compared to pretending to give the kids drugs
but actually giving them nothing at all.
In the absence of effective and affordable treatments for autism,
parents of children with the disorder are extremely vulnerable
to extravagant claims of potential cures.
In the case of secretin, it was like a perfect storm of factors
that propagated the myth, prompting a frenzy of secretin purchases by
thousands of parents, often at hundreds or even thousands of dollars per dose.
The "secretin story" shows why it's so important
to subject proposed treatments to scientific scrutiny,
instead of just accepting anecdotal reports as proof.