SIBO and autism: WTF?

July 1, 2020 7:14 AM

(Labeled as "human relations" rather than "health and fitness" for reasons.) Because of digestive woes, I have been exploring the possibility that I may have Small Intestine Bacterial Overgrowth (SIBO). I know that there is a mind-gut connection in general but I am no doctor. I have run across something that is upsetting to me and would like a gut check, as it were, from the hive mind. Warning for content below that offers a seemingly bogus connection between SIBO and autism that I find deeply offensive.

Is there a constructive way to respond to someone being wrong on the Internet? That is a sincere question.

I have found several websites run by people who either claim to be MDs or operated by organizations that have impressive sounding institutional names that claim to be experts in SIBO and have some version on their websites of the content below (emphasis mine):

Symptoms are different for everyone, but common ones include: bloating, belching, cramps, constipation, diarrhea, heartburn (reflux or GERD), nausea, food sensitivities, headaches, joint pain, fatigue, skin rashes, respiratory symptoms (such as asthma), mood symptoms (such as depression), brain symptoms (such as autism), eczema, steatorrhea (fatty stools), iron deficiency anemia, flatulence, abdominal pain, vitamin B12 deficiency, and others. Learn more about SIBO symptoms and associated conditions and/or risk factors.

To the best of my knowledge, there is no known single cause for autism spectrum disorder. Reading this bullshit makes me want to take a flamethrower and destroy all of these websites and the people behind them because I am sick of hucksters of all types, including and especially people trying to profit from fear coupled with ignorance. When it comes to health hucksterism, is there any meaningful way to try to shut down stuff like this?

(Note: If you have opinions about autism but are not autistic yourself, please do not comment. This is not a question about autism, it is a question about if or how to respond to seemingly shitty medical advice from Internet strangers who get paid for their services.)

posted by Bella Donna to Human Relations (7 answers total)

I am an autistic person. Autism is not a "brain symptom", it is a basic underlying neurological wiring structure. Autistic people are generally trained from birth to pretend to be neurotypical (and can be really good at it), but it takes a continuous conscious mental effort, and when other things happen that suck up some of that mental energy, the mask can slip and other people might notice that you're weird/bizarre/alien [which, if it's not clear, is generally seen by the autistic person as a very bad thing, hence the effort dedicated to masking]. This all holds for autistic people who do not know they're autistic (like me until the past few months, though I have never been all that good at masking). There are a lot of terrible things said about and done to autistic people by actual doctors.

That Atlantic article is bullshit and deeply offensive. A much more plausible explanation of the string of events is the poor kid is in ongoing distress but can't find the words to express it (maybe he's been punished and gaslit all his life for complaining about other sensory distresses?); uses increasingly extreme levels of stimming to attempt to self-regulate (and drown out the digestive distress); parents see the stimming and freak the heck out; underlying digestive problem miraculously gets guessed correctly and sorted out; kid is much happier. The most telling line is when one of the doctors says, "My heart goes out to the parents, because this is a daily struggle." Ugh.

Your best bet for dealing with the websites is to see if they break a regulatory rule -- like, if they are offering products or treatments that have not been approved by the local health regulatory agency to diagnose, treat, or prevent the conditions that they're claiming.

I hope your SIBO gets sorted out! I've never had it so I don't have any advice to give. :(
posted by heatherlogan at 8:04 AM on July 1, 2020 [12 favorites]

Ugh, now I too want a flamethrower, flamethrowers for everyone! Restricting myself to the specific questions so as to spare you my rant which I'm sure sounds a lot like yours:

My experience has been that one outraged person is not going to change the mind of the specific person/doctor/institution making bogus claims. If I wanted to shut it down I'd see what else I can leverage. If they're an MD, is there some sort of association or oversight board you can report them to? Can you go up the chain within their organization, or does their whole org seem rotten from the top down? If they're affiliating themselves with a less-quacky institution, can you make the other institution aware of the situation and strongly encourage them to disengage? Are they shilling some sort of treatment you can report? You probably can't change these people's minds but you may be able to starve them of support, collaborators, and attention. Especially if you can find some likeminded people willing to join you in making complaints.
posted by Stacey at 8:19 AM on July 1, 2020 [2 favorites]

I know it’s frustrating to see people sort of peddling “cures” or the like for autism but I don’t think this is worth your energy. I think that no, there likely isn’t a way to respond to these doctors or organizations to shift their thinking. I think gut health is real and important but I also get the sense that most people who are making it their primary busine$$ right now are not operating from the best place in terms of values.
posted by needs more cowbell at 8:50 AM on July 1, 2020 [3 favorites]

I am autistic. There is a correlation between autism and gut issues of various kinds, but this article implies that SIBO actually CAUSES autism! As heatherlogan said, that's part of autism prejudice. The correlation is not universal and the link is not fully understood. You could respond with words to that effect. That's what I would do, as an Aspie and advocate for people on the spectrum.
posted by Beethoven's Sith at 9:12 AM on July 1, 2020 [9 favorites]

I know from some family drama that at least some (maybe all?) of these doctors are selling some serious snake oil to parents of autistic children, and this kind of phrasing on their websites is deliberate to attract the searches of parents who are looking for medical professionals who will cooperate with the solution the parent has been convinced is the only possible option.

So I don't think they care if you don't like it (they may not even believe it themselves), they've got well-paying fraud to commit just under the radar so they rarely technically fall afoul of fraud, insurance scam, or malpractice charges. You could try reporting them to whatever state/regional entity they're licensed in, if that gives you any satisfaction, but it's unlikely that anything will change. (In the case of my family drama, there was legal action and the doctor is still in business selling the same old snake oil.)
posted by Lyn Never at 10:36 AM on July 1, 2020 [3 favorites]

The fact that you're seeing almost the same wording on various sites suggests to me that this content was written by some poorly-paid person doing SEO who copied a poorly-sourced article that then got propagated by other people an/or they were given a list of conditions to use as keywords to include. Except for a few very well known sites (e.g. Mayo Clinic), I wouldn't put much stock in doctors' webpages online, sadly.

PubMed is a better source of medical information than generalist search engines - there will still be lower-quality papers, but you'll get a better perspective on what researchers think about a medical topic and how those opinions are evolving. Abstracts and many articles are free to read. SIBO on PubMed

ETA: yes this is upsetting and wrong, yes you are also correct to guess that trying to change this content is probably not a battle worth fighting
posted by momus_window at 12:12 PM on July 1, 2020 [2 favorites]

These people know they're selling snake oil. You're right to be offended, of course, but I can't think of any useful way to engage with this kind of hucksterism.
posted by Ragged Richard at 1:18 PM on July 1, 2020