MMS, or “Miracle Mineral Solution”, was presented at the AutismOne conference this year as the latest “cure” for autism. The idea (giving bleach to disabled children to rid them of non-existent parasites) is so bad that many stood up to decry the idea. A change.org petition was even created, No bleach enemas to “cure” autism in children!, which currently has over 1,300 signatures.
The idea is so obviously bad that my personal feeling was that AutismOne had failed to screen the talk before accepting it. I realize that after this long watching the autism/biomed world that sounds incredibly naive, but that was the truth.
I may be naive, but a long while back I gave up on reading the Age of Autism blog (AoA) regularly. After a long time hoping that there would be some trend away from the unscientific, damaging messages they continually put out I had to call it quits. But I still have email and people send me links. And sometimes one just has to follow the links. Like when I heard that AoA was defending MMS. I’m not naive enough to have hoped for public statement or an apology from AutismOne about promoting this. More like a quiet abandonment of an obviously bad idea. Like when people slowly moved away from a gentleman who would, for a mere few thousand dollars, review some video of your kid and tell you he/she was vaccine damaged (promoted by and a former advertiser on AoA). But this time the Age of Autism isn’t quietly accepting the facts. In the ironically titled “Autism One: Is There a Doctor in the House?” AoA defends MMS.
The arguments are actually fairly standard. Such as one can’t criticize MMS if one hasn’t been to the talk. (funny from a blog who recently bashed IMFAR without attending).
Here is another of the the standard defenses. Rather than discuss the issues head-on, build a straw-man:
It struck me as really odd that something most people at the conference didn’t even know much about had already been completely scrutinized by people who seem loathe the mere idea of medically treating a child with Autism (with anything but pharmaceuticals, apparently). It seemed obsessive and premature, to say the least, and it was eerily reminiscent of what happened with other interventions in the past.
Yes, it isn’t about safety of disabled children. It isn’t about the fact that the idea of using bleach (a bad idea on its own) to rid the body of parasites (which are not shown to be present in the children) in order to rid them of autism (which is not caused by parasites) is a bad idea.
Yes, “obsessive and premature”. Like those bloggers who wrote about chelation before the death of Tariq Nadama, the autistic child who was killed by IV chelation.
How is it premature, exactly, to look at a protocol (keep upping the dose until the kid starts to vomit, then back off) and say, “You know, this isn’t such a good idea”?
How ironic is it to defend a “therapy” which has no data showing it works, no plausible biological mechanism by claiming that others are “premature”?
Shall we go the standard arguments?
1) By Age of Autism standards anyone can be a lay expert by attending conferences and reading websites. Expert enough to act as a treating physician for one’s own children. But, you can’t be a lay expert (or, for example, a real expert on biology like Emily Willingham) if you disagree with a clearly bad practice like forcing disabled children to drink bleach.
2) Those who promote biomed are brave and use their real names. Those who don’t are “cowards” with fake names. Doubly ironic given that the blogger (who AoA won’t name) does use her real name and her copycats (an AoA spinoff) don’t. I challenge people to tell me how my writing has changed between when I was pseudonymous and now that I am publicly known. Over 1,000 signatures on Change.org….lot’s of real names there.
3) People are trying to “discourage” others from trying to “help their child” when the criticize certain biomed practices. In this case, people are trying to inform the public about a dangerous practice which has no good science and no real evidence to indicate it helps anyone.
4) “Anti-biomed folks always seem to forget that no one is claiming to have the cure for Autism.” Yes, they hide behind vague statements of “recovery” and “lost diagnoses” (as in the presentation made at AutismOne).
5) “Anyway, I tried not to let the blogger get to me, but admittedly, a number of times I found myself gritting my teeth thinking about how stupid she makes us sound.” Why are these discussions always about how smart people are? Anyone not smart enough to realize that being smart doesn’t mean one can’t make mistakes is, well, foolish.
6) Using authorities to claim that they must be right. In this case, she relies heavily on Martha Herbert, who spoke at AutismOne. “I also wondered if she considered Dr. Martha Herbert, MD a snake oil saleswoman.” I don’t recall seeing where Martha Herbert approved this therapy. I recall this news story, where Martha Herbert made it clear that she is not “an uncritical booster and fan of potentially dangerous unorthodox treatments”:
Herbert said she endorses the movement’s push to look at environmental toxins as a possible factor in autism and supports researching whether various treatments can improve the health of children with the disorder. Chelation, she wrote in an e-mail, “is a very special case” and should not be used “to praise or damn other approaches.”
In an earlier e-mail she wrote that she would sue the Tribune if she was portrayed as “an uncritical booster and fan of potentially dangerous unorthodox treatments.”
“I’m not defending chelation,” Herbert said in an interview. “I will sue you if you say that.”
Age of Autism writer Kim Stagliano has jumped to the defense of MMS as well with this comment:
When was the last time you saw an article on AofA deriding parents who put their kids onto Risperdal until they are obese or place them in resi care before trying a single biomed intervention? NEVER. It’s the difference between those of us with hope and aspirations and they who prefer to kick other parents to support their own choices. We should pity the parents who’ve given up using acceptance as an excuse for inaction.
It’s the same message that Jenny McCarthy put in her book and her AutismOne keynote speeches: “We are the ones with hope. Pity those who have given up” (or, as Jenny McCarthy more disgustingly put it, those who “like the attention” of having a disabled child and so do nothing).
The irony is just amazing in this comment. Ms. Stagliano moves directly from “We don’t deride others” into calling other parents pitiful. What is calling non-biomed parents “pitiful” and people who have “given up” and “using acceptance as an excuse for inaction” but derision?
I know I was naive. Hoping that with just a small amount of thought people would back away from something as clearly ill founded as bleach as a therapy. I had hope these people would do the right thing.